Would you like to be a member of our research panel? Join here - there's (nearly) always a great incentive offered for your views.

Aortic Stenosis / Hypoplastic Left Heart Syndrome at 20 weeks - any experiences?

(239 Posts)
LittleMy34 Mon 28-Jan-08 14:17:27

Hello all,

Have just had a foetal heart scan at 20 weeks following a high nuchal translucency measurement, and unfortunately they found that the baby has severe aortic stenosis - a narrowing of at least one and possibly two of the main arteries. They seem to think that it's fairly likely to lead to Hypoplastic Left Heart Syndrome by the time the baby is born, which is very severe and the baby would die within a few days without major surgery.
If we go ahead, the baby would need surgery within a day or two of birth, followed by two more ops before he reaches school age. the fist op carries a 30% mortality risk, the second two are less severe.

So now we're trying to decide what to do - which is proving a bit difficult, to say the least..... Neither option seems like the obvious thing to do.

anyone had this experience? how on earth did you go about making a decision?

any thoughts welcomed.

LittleMy

tori32 Mon 28-Jan-08 14:29:47

A good friend of mine has a dd who was found to have her aorta attached to the right ventricle at 5wks old. Not the same condition, however, life threatening. They went ahead with the aortic switch operation and their dd was in ICU for a couple of months, she is now 3yrs and is doing extremely well, happy and healthy.

It is a very difficult decision, but as they say, 'It is better to have loved and lost than to never have loved at all' x
Meaning that if you don't go ahead you will not get the opportunity to know what may be.
Very sad for your news.

RosaLuxOnTheBrightSideOfLife Mon 28-Jan-08 14:35:03

My DH was born with this condition in 1968. He was a 28 week twin who weighed just 2lbs. Sadly his twin did not survive. He had several operations in childhood and has to have an MRI every year as he may require a valve replacement operation at some point in the future. But he is happy, healthy and looking forward to his 40th birthday this year.

marina Mon 28-Jan-08 14:43:15

Ds' best pal had aortic stenosis, although I think it cannot have been as severe as the scenario you've been given.
He did very well in surgery as a newborn and apart from the occasional follow-up with a cardiologist he is as fit and well as any other child we know.
What a terrible blow for you all, LittleMy. Can the scanning hospital arrange for you to meet a paediatric surgeon in the field to explain the operation and prognosis in more detail to you, or have you already had such a meeting? Do you have a clear idea of where your baby would be admitted for this surgery?
Antenatal Results and Choices (ARC) provide counselling and advice for people considering termination following in utero diagnosis. Perhaps they can give you some help.
HLHS used to be invariably fatal. So much has been done to make it possible for babies with this condition to have a reasonable chance of a good life after surgery.
Thinking of you and good luck with your decision.

ohnoherewego Mon 28-Jan-08 14:46:58

There is a charity Little Hearts Matter based in Brum which has vast experience of Hypoplast. Contact them as they have great knowledge and will talk you thro' every thing. Best Wishes

LittleMy34 Mon 28-Jan-08 15:59:37

Thanks for all your messages - we have stacks of information about it all - the problem is in knowing how on earth to make the decision. Either we terminate, which is a certain outcome, or we put our son through three traumatic and invasive surgical procedures, one within days of birth, with overall only a 70% chance of survival. plus he would then have to be careful of endocarditis for the rest of his life, and probably face more operations as he got older to replace shunts etc as he outgrew them.

and on top of all that, there's the possibility that his heart might fail anyway and he would need a transplant, which he may not be able to get.

but he could lead a relatively normal life and go on to have family of his own.

how on earth does one choose between those two options!
sorry, am feeling a bit lost.
sad

marina Mon 28-Jan-08 16:24:03

Do you have other children to consider LittleMy?

LittleMy34 Mon 28-Jan-08 16:30:09

Yes - DS1 is nearly two. That's the other complication - how will he cope if we're spending weeks at a time up at Guy's in London (we're in Bristol) and he has to be at Grannie's or at home with one parent while the other one is up in London?

Plus the potential trauma of losing a sibling later on in life, and the fact that certainly until this baby is around three, this would rule our lives completely.

But then I wonder if I'm using that as an excuse to cop out of it all.

yikes.

marina Mon 28-Jan-08 16:39:41

I don't see it as an excuse, I see it as a valid factor. Your ds1 is too young to understand why all the disruption is happening. A child of four and over would be capable of better acceptance of the situation.
On the other hand it is possible that ds1 would in time forget it all.
What you are experiencing here is one of the downsides of excellent antenatal screening procedures, I am so sorry you are faced with this dilemma.
I wish someone with better understanding of your situation was around to talk to you. Keep bumping because we have people on here whose children have had huge surgery as newborns, and people whose decision was to terminate the pregnancy. Mn is the sort of environment where support is there whatever path you take. The charity OhNo mentions sounds especially worth contacting.

LittleMy34 Mon 28-Jan-08 17:17:42

Thanks marina, it makes me feel better to know that you don't think I'm just copping out. Not that terminating would be the easy option, but I don't want to always wonder what the outcome would have been for our little boy if we'd gone ahead.

It's all too difficult - but DS1 will be home from nursery in a minute, so am going to try and forget about it for a while and concentrate on him!

Thank you for your kind words - much appreciated.

smile

debinaustria Mon 28-Jan-08 18:03:24

Just bumping this for you Littlemy

finallypregnant Mon 28-Jan-08 18:09:05

I don't know what to say to you as I have not come across this before but surely a 70% chance of survival has got to be worth giving him a chance? Are you sure that if you terminated now you wouldn't be thinking "what if".

I don't envy you this decision at all.

Rolf Mon 28-Jan-08 18:57:22

What an awful situation for you, LittleMy.

I was told my DD had a brain abnormality when I was about 24 weeks pregnant, and we were referred to a neurosurgeon to discuss shunt surgery. As things turned out, DD was fine but it was extremely helpful to meet the surgeon. The comment that stuck with me in particular was that they treat the child, not the scan.

I spoke to a counsellor at LIFE, which is an RC charity, as I wanted to talk to someone who understood how frightened I was, without being steered down the amnio/late termination path, which I knew in my heart wasn't the answer for me but I was scared that in my panic I would bolt down it. They were extremely helpful and completely understood how frightened I was for my baby, myself and the rest of my family.

Rolf/MrsDarcy

bundle Mon 28-Jan-08 19:06:30

I have a friend whose second child had HLHS which wasn't diagnosed antenatally. He went home from hospital fine, but after about a week he was rushed back in and resuscitated. His surgeon said his aorta was one of the smallest he'd ever operated on when he did the first stage of surgery. Sadly, he didn't survive but many children do nowadays. Wishing you strength at this difficult time, xxx

andiemustlosehalfastonemore Mon 28-Jan-08 19:07:33

littlemy I work in a children's cardiac unit so have experience of caring for infants and children with hypoplastic left heart
All I can say to you is that you need to make the decison that is right for you and your family and not for anyone else
At the unit where I work the last research we did showed that about 40% of parents chose to terminate and 60% to carry on with the pregnancy
I am not going to say anymore but I would advise you to contact the children's heart federation helpline they can put you in touch with other parents who have gone through similar situations. I don't think anyone can advise you unless they have been through it themselves as it is a very difficult decision to make
their contact details are here
they have a helpline that you can call
take care this is a really hard time for you and your dh please get as much help and support as you need

LittleMy34 Mon 28-Jan-08 19:15:01

Thanks for all your thoughts and help.

finallypregnant - if it was just the 70% survival rate, I think we'd go for it no problems. The trouble is, that's just the rate of getting through the operations - there's still the possibility of heart failure, plus reduced life expectancy etc. Plus I don't know how I feel about putting such a tiny infant through incredible major surgery - I've always been of the opinion that there's a point at which further medical treatment becomes too much to bear - I'm just not sure what that point is!

Rolf - that's interesting to hear, I do feel the doctors are steering us down the termination route, whether consciously or unconsciously. Will seek out some people to talk to.

andie - thank you for your wise words - would you be able to tell me, how do the children in the cardiac unit cope? I'm very worried about putting a child through such traumatic surgery, i saw my dad go through valve replacement surgery and it was pretty awful to be honest.

feeling much calmer, but still have no idea what to do!

bundle Mon 28-Jan-08 19:18:51

littlemy, I remember talking to my friend about the surgery and she too felt that had her son survived his life would have been filled with hospital visits and a limited life expectancy. She also worried about the impact on her older daughter. Please take your time and be kind to yourself, xx

LittleMy34 Mon 28-Jan-08 19:23:45

thanks bundle, that's exactly what I'm afraid of. We're talking about a child which without drastic medical intervention, would certainly die - I just wonder at what point we should decide to let nature do what it does best, and not to intervene.

but I feel like I'm letting my child down if I don't fight for it to live.

My grandmother had a baby who died at two days old, probably from the same problem, but this was back in the early 1930s so completely undiagnosed. In some ways I wonder if it was easier then, when there weren't all these options available and choices were much more limited!

bundle Mon 28-Jan-08 19:25:47

exactly littlemy, the technology does make it harder in lots of ways. but having said that my friend and her family were absolutely certain they were right to give him the opportunity via the surgery to have a chance at life and I'm sure they don't regret it. xxx

marina Mon 28-Jan-08 19:31:06

Oh good, more helpful and detailed posts (was hoping you'd see this andie and bundle)
It's a different medical condition but some friends ds1 was born with artery and liver problems (undetected in pregnancy) and had two major operations as a young baby. Sadly, like bundle's friends' baby, he did not make it, but I know they do not regret giving him a chance of a life beyond infancy

eidsvold Mon 28-Jan-08 19:36:41

Same thing happened here - we were given a diagnosis of hypoplastic left heart at our 20 week scan.

Between our 20 week scan and our referral to Kings for fetal cardiac scans - We talked about it and decided that no matter what this was our baby and she would be born - we would deal with the rest one day at a time. That is the decision that we made. We know that others in our position have not made that decision.

I know when we were looking into it there was a brilliant group in the US that we were able to get a lot of information from.

Our outcome - after being sent to Kings for further fetal cardiac scans - we learnt our daughter did not have HPLH but a complete AVSD ( hole between aortas and hole between ventricles) and down syndrome.

She had two open heart surgeries at 8 weeks old. She is at risk of endocarditis and will be for life. We just make sure it is known that she needs antibiotics prior to surgery. She has annual visits for the cadiologist but we do have a lot of other visits to hospital for other reasons.

TOday I say goodbye as that little babe goes off to school for the first time!! (pic on my profile)

IT was tough watching her go through such invasive surgery and to think how on earth those surgeons are able to operate on such tiny tiny hearts. But she was ( and still is) a fighter and she is doing so well now.

Saggarmakersbottomknocker Mon 28-Jan-08 19:41:05

LittleMy34 - hello - congratulations on your pregnancy. My dd has a rare congenital heart defect (not HLHS). We didn't know about it before she was born so were never faced with the decision whether or not to continue with the pregnancy. I also have older children, ds1 was 5 and ds2, 2 when we had dd.

dd had major heart surgery as a baby and spent a long time in hospital and ICU away from our home. She would have been considered for transplant but at the time was ironically too poorly. We have had much uncertainty over her future; she has only had the one surgery, isn't 'fixed' but is finely balanced at the moment and managing well on medication. She has had several other cardiac procedures as a toddler and young child and has coped well.

I can't tell you what to do, what is the right decision. I do have personal knowledge of many children with HLHS and some with even more complex conditions, they don't all make it that's true, but many of them are living full lives despite being 'life limited'.

Someone has mentioned Little Hearts Matter, also the Children's Heart Federation and Heartline. There is a very active message board at Heartline where you will find a pregnancy board also the message board at Little Hearts Matter has an antenatal diagnosis section.

I have to say that some doctors are not very up to date with the advances in surgery for HLHS - 10 or 12 years ago it was considered unsurvivable but there have been great forward steps with the treatment. However, it is still a very difficult path to follow. Try to speak with a paeds cardiac surgeon if you can. You may be able to chat with a Cardiac Liasion nurse if you call Guys.

I know I won't have helped you much here particularly - it is such a personal decision - if you have anymore questions I'll try to answer them if I can.

Saggarmakersbottomknocker Mon 28-Jan-08 19:46:19

Heartline message board.The link to the Heartline main page is at the bottom.

Little Hearts Matter

Children's Heart Federation

eidsvold Mon 28-Jan-08 19:57:01

very helpful

we found talking with other parents who had been there done that so to speak very very helpful.

parent site

another parent groupthis is the one mentioned by ohnoherewego.

As dd1 was our first we did not have to consider other siblings BUT we did not intend for her to be an only child. Dd2 who is 3 - things going to hospital for appts to see various consultants is what you do. She knows that there are some children who are born with things that doctors need to check up or things that need to be fixed ( she is 3 so simple explantations.)

Saggarmakersbottomknocker Mon 28-Jan-08 20:00:51

Oh snap eidsvold!

bagpuss Mon 28-Jan-08 20:14:46

I was just about to mention Heartline but Saggar has beaten me to it smile.

My situation was similar to Saggar's in that we didn't know that ds1 had a congenital heart defect until after his birth. He was taken into hospital as an emergency case and of course all I wanted in the world was for him to stay alive. DH and I have often since spoken about what might have happened had we known about his condition before his birth and neither of us would have known what to do in all honesty. Ds1 is now a very happy and healthy 7 year old and to look at him you would never know what he had been through as a baby. We do worry for his future in that it isn't going to be as straightforward as a heart healthy person's would. I remember thinking that at the time of his diagnosis all the tests and precautions sounded so scary but my experience of them since has been quite positive on the whole. Good luck with your decision, it is both a very difficult and personal one.

mumofk Mon 28-Jan-08 20:20:30

I'm a sonographer. I scanned a friend. At the time I did not have the training to pick up this condition, and I didn't see it. My friend lives somewhere they do not offer anatomy checks, so I was doing a 'favour' letting her see baby and get pics. Her baby was fine for 1 week and then was rushed to hospital as he was floppy and blue, and had surgery at 9 days old. He then got enterising (sorry, sp) colitis and was in SCBU for 6 weeks. He is very lucky and is FINE now- he goes for annual check ups now he's two, but ATM is unlikely to require further surgery. His Dad actually had the same condition ( I didn't know until afterwards, he's fine too),and the surgery when a few weeks older but they were told at booking with this pg it was not a genetic condition, and it wasn't considered until he was ill.
The only side effect from the bowel problems is my friends little boy does get constipated, but not all the time and does depend on his diet (so it could be unrelated but his parents don't think so).
It makes me go cold that if I had picked it up at the scan he might not be here had his parents been directed/pushed towards termination. (I'm still having major guilts about not seeing it, despite it not being something I was trained to look for).
I completely agree with whats been said above- you're in such a difficult position with the curse of modern technology- so often it can reassure but the rest of the time it raises dilemmas we wouldn't have a hope in contemplating 10, 20 30 yrs ago.
I hope the information and helplines and websites everyone else have provided can help you, and hugs and support from me with whatever you decide.
mumofk

soph28 Mon 28-Jan-08 20:34:26

I don't know how helpful this will be but I think it is good to hear the positive outcomes too.

Friends of good friends of ours were given a similar diagnosis at their 20wk scan. Could have been the same, all I know is that he had major heart problems, the parents were told he would not grow properly, may not survive to full term and if he did would diefinitely need heart surgery in the first few days and probably wouldn't live much longer than that.

What actually happened was that he continued to grow strong and healthy and was born at full term weighing over 9lbs. He was doing so well they have postponed any thought of surgery till he is at least a year, and in the meantime he is a thriving, happy 9mth old.

I know this isn't always the case and should you decide not to terminate you may have a very different experience. However, things can turn out better than expected.

I am sorry that you have had this news about your baby and my thoughts are with you as you and your family make this difficult decision. xxxx

LittleMy34 Mon 28-Jan-08 21:02:20

Thanks everyone for your stories and support. We've decided to have a pizza and go to bed, hoping that sleeping on it will give us some perspective. Feeling completely exhausted!

Thanks again - will post back tomorrow

littlemy x

andiemustlosehalfastonemore Mon 28-Jan-08 21:48:54

hi littlemy hope you enjoyed the pizza smile

I have looked after many children having open heart surgery and on the whole they do very well. Infants and children recover much more quickly than adults do from things as they do not have the idea that they are ill iyswim. tbh I think it is more traumatic for the parents to see the babies like that than it is for the babies. We make sure that they are given pain killers and they are often sedated after the surgery but if all goes well they start to feed quickly and get back to normal quickly. With HLHS as they said there is a high death rate for the intial surgery and you do have to think that they will have 2 more ops but the outcomes from surgery are much much better than they were and because research is being done all the time and treatments improving then we don't know what the next 5 years might bring in terms of developments.
I am not saying this to try and persuade you to go ahead with the pregnancy as the flip side of all of this is that the baby may die before the first op after the first op or subsequent to that. They may also have a long recovery period as there is always the risk of complications.
You need to consider the effect of having a very very sick sibling on your other child and I know this is something you have thought about.

All I can say again is that you need to make the decision that is right for you not for anyone else. I honestly don't know what I would do if I were in your shoes and I have worked in the area for 16 years and am now very senior. Please contact the hospital again and ask to speak to a surgeon who does HLHS surgery (although bear in mind that they often are pro surgery as they do it iyswim) or to speak to a cardiac liaison nurse every children's heart unit in the country has at least one and they will be able to give you up to date info about their unit. The other thing to bear in mind if you choose to carry on with the pregnancy is that not all children's cardiac units do lots of HLHS surgery. Ther are some that do a lot more than others and depending where you live you should ask to go to one that does a lot.

I hope this helps please ask if you need more info.

Saggarmakersbottomknocker Tue 29-Jan-08 08:48:44

LittleMy - been thinking of you. Hope you got a decent night.

LittleMy

Been thinking of you. I'm amazed and impressed by all the thoughtful and helpful messages you received on this thread. I know whatever decision you make will be hard. I have no first hand experience of this situation (although I had a friend who had heart ops as a baby and recently one as an adult) but I would only say that whenever I've had to make a tough decision in my life, going with my first instinct has never left me with regret.

I hope you find the answer you're looking for.

Sending hugs

China

blueshoes Tue 29-Jan-08 10:31:24

LittleMy34, I am so sorry you have to make this decision. You and dh have the strength to do this. You know that whatever you do, it will be the best course for your ds.

My dd was born with a congenital heart condition which was surgically corrected at Guys' Hospital, now the spanking new Evelina Children's Hospital. Although hers was mild (just a big VSD), we did come into contact with many families whose dcs were there for multiple surgeries.

I am sure you would have been given leaflets from about ECHO, the support group for families of heart children treated at Evelina. They are very helpful and can put you in contact with a parent whose child has the same condition, to answer your questions from a holistic, rather than medical, perspective.

Also, if you are wondering about quality of life issues, I know of this other association, Grown Up Congenital Heart Patients AssociationGUCH, which supports young people and adults who have grown up with this condition. Perhaps you can give them a call to see how they can help you.

Let me know if you need anything else. <<hugs>>

tori32 Tue 29-Jan-08 14:34:56

I worked in operating theatres until having dd as a scrub nurse. I can only echo what andiemustlosehalfastonemore has said. That you have to make the right decision for your family, but that children bounce back and are far more resilient than adults having similar surgery. They don't have the fear because they don't understand enough to fear the surgery. Parents have fear for them. Also, they don't know they are very ill iyswim and have no preconcieved ideas about how they should be so as soon as physically able they bounce back. At such a young age I have not encountered anyone who can remember being operated on, including myself at age 12 years. The anaesthetic drugs have sedative and amnesic effects (make you forget).
Good luck in whatever you decide x

LittleMy34 Tue 29-Jan-08 16:42:21

Thank you all for your continued support and really useful information. Have been wading through more information today and spoken to a lovely lady at ARC (Antenatal Results and something or other) who was very helpful in listening to my stupidest thoughts.

I have some more questions for the cardiologist who did the scan, so am waiting for her to call me. Looking back on it, she was quite brusque with us at the time and i think we need more information than we got then. Having said that, there's only so much you can take in at that particular moment!

One thing the lady at ARC said that stands out was that sometimes it's impossible to make a decision until enough time has passed to take it all in and also to come to terms with what your gut instinct is telling you. That was really helpful, I now feel we can take some time without having made a decision just to let it all sink in. And as neither option is very attractive, I think what she said about needing time to come to terms with the decision is spot on.

So that's what we're trying to do! Work have been lovely and told me to take as much time as I need, which is good. It's DH's birthday on Thursday, not a good time for him but I'm determined to bake him a cake at least so I can do that tomorrow.

Thanks again all - we'll get to a decision and I know we'll learn to live with whatever it is in the long run. It's just going to take a bit of time.

wink

RosaLuxOnTheBrightSideOfLife Tue 29-Jan-08 17:25:51

LittleMy - I am so impressed with the amount of knowledge and support on this thread. There is so much help out there to support you into coming to the right decision for you.
I also just wanted to thank blueshoes for posting the link to GUCH, which DH hadn't known about and which I think will be very helpful for him. He has had a lot of conflicting information from different consultants about his condition over the years and sometimes it can be hard to find out what the most up-to-date thinking is, but Mumsnetters as usual are up to speed with everything!

andiemustlosehalfastonemore Tue 29-Jan-08 18:15:32

littlemy I think I can guess where you had your scan wink hope dhs birthday is ok and I will be thinking about you and checking the thread
if you need anymore info please post

LittleMy34 Tue 29-Jan-08 18:44:28

Do you know Bristol then andie? If you do there's only really one option in terms of where it was - sounds like you have personal experience of the people there.....

Saggarmakersbottomknocker Tue 29-Jan-08 19:00:31

LittleMy - glad that you have had a chat with someone today. Enjoy baking and eating your cake. smile

You asked before about how siblings managed. I just wanted to ask if you have a good family network? My parents were extremely helpful when dd was in hospital for long periods. They looked after my other children at our home, kept them in a routine and generally smoothed over the cracks. Kept me sane TBH!

I hope the cardiologist can give you a clearer picture when she calls back. She can probably send on your scan tape for another opinion if you are not completely happy with her. I have friends whose children are looked after at Guys and are more than happy. We are looked after at Birmingham and the team there are very experienced with HLHS.

Take care and take the time to come to a decision that's right for you.

LittleMy34 Tue 29-Jan-08 19:06:38

Thanks Saggarmakers - we only have my mum in Bristol - she looks after DS1 for half a day a week but she's nearly 70 so can't do much more, and she's a psychotherapist so has clients most days, which means it's tricky. Three sisters, but they're all in different parts of the country and with children of their own, so a bit tricky for them to be much help.

Have got some lovely friends though, including a few with children the same age and some without kids but who love DS1 to bits, so I'm sure we'll muddle through no matter what happens.

andiemustlosehalfastonemore Tue 29-Jan-08 19:06:44

no littlemy was thinking of london as I know 2 of the cons are very brusque what does that say about their bedside manner shock they must all be brusque!

LittleMy34 Tue 29-Jan-08 19:09:51

Has to be said, they could do with some bedside manner training! Our antenatal consultant is lovely though, really sympathetic and able to listen, such a rare quality in a consultant....

I know they do amazing work, but I think sometimes they get so wrapped up in the procedures and the statistics it's hard to remember it's a baby's life involved.

wink

bagpuss Tue 29-Jan-08 20:30:30

Andie, I would say they are all like that - our consultant (Alder Hey) is a classic example. When dh last took ds1 for a check up he overheard one of the nurses say to another (in reference to our lovely consultant), "Oh look, here comes God..." It made dh grin.

Littlemy, was just coming back to this thread to see how you are doing. You have some excellent advice here. DH and I were discussing it earlier and he said that he agrees with what andie said further down the thread wrt finding out about your unit's record for HLHS surgery.

Saggarmakersbottomknocker Tue 29-Jan-08 20:38:06

LittleMy - I do have a link to a site which has unit stats - probably andie knows which one I mean. I will post it if you'd like. Or not. Just say. Stats like these are difficult to inteprete though in isolation and are really not a like for like comparison. For example a unit which has a poor mortality rate isn't necessarily one to avoid - it may be that it takes the severe cases that other units feel unable to manage.

Re consultants - most call a spade a spade I find and aren't in the business of giving false hope. Often it can be interpreted as being unsympathetic or harsh. Some do just think they're God though wink

LittleMy34 Tue 29-Jan-08 21:59:29

Apparently we would have to go to Guy's as the Bristol Children's Hospital doesn't have much experience of HLHS - I looked up Guy's stats already and they're pretty good, but at the moment it's less about survival rates and risks etc, and more about whether we can decide to put our child through all that, and whether even the best possible outcome is worth the pain and trauma that getting there would take.

sorry, not nice things to have to think about

sad

Saggarmakersbottomknocker Tue 29-Jan-08 22:03:52

I know sad I'm sorry that you even have to be thinking about it LittleMy.

Be kind to yourself.

Littlemy - just wanted you to know I will be praying for you and your dh as you face this terribly hard situation.

bundle Tue 29-Jan-08 22:09:44

littlemy my friend was at Guy's with her ds - she was at first a bit disappointed that they hadn't gone to GOSH (there was no bed available) but then realised how good the team is at Guy's, the surgeons did everything they could and they couldn't speak highly enough of the whole team there, x

andiemustlosehalfastonemore Wed 30-Jan-08 08:31:07

littlemy guys is definitely one of the places to go I know the senior surgeon there very well and he is excellent brusque but very very good they have a well developed hlhs service and good results
but as you said this is about whether you want to make that decision or not so I think I will stop posting about surgery unless you ask and leave you to make up your mind about the way forward for your family

I will be thinking about you over the next few days if you need anymore info just ask I know how difficult this must be for you but we are always here to talk to through cyberspace and lots of us are thinking of you smile

LittleMy34 Wed 30-Jan-08 11:49:11

Thanks andie, and northernlurker and saggarmakers, and bundle. We both feel a bit calmer than we were - the shock seems to have worn off, but we're still not sure of a decision. I'm leaning towards termination (sorry if I upset anyone with this, I know it's a difficult subject), but although DH is also leaning that way, I think he's worried that he only wants that option because he's scared of how hard it would be if we went ahead.

and I'm worried that he might make a decision based on what I want, rather than what he wants......

sad

crabby Wed 30-Jan-08 12:06:41

Littlemy, I was so sorry to hear about your scan. I've worked in Paeds ITU at Guy's and have spent a lot of time with parents who have been in the same position as you but chosen to carry on with the pregnancy. All I can say is that there is no right decision. The surgeries are stressful for all the family and you have to think of not just your unborn baby but your other child and yourselves too. Outcomes are very variable too.

I am not anti-termination at all and HLHS is one of the conditions I would seriously consider it for. I don't think that until you have been in the really difficult position you find yourselves in can you really judge what you would (or should) do.

Good luck. I am sure that you will make the right decision. I will be thinking of you. xx

LittleMy34 Wed 30-Jan-08 12:33:47

Thanks crabby, it's good to hear someone say with honesty that outcomes for this condition are variable - I'm not sure with something this serious that it is necessarily a case of doing everything one can possibly do, if you see what I mean, but maybe of knowing where to draw the line?

just thinking aloud....

sheila0 Wed 30-Jan-08 13:11:26

Hi LittleMy34
I'm currently 23 weeks pregnant with our first baby (a little boy!) and at 20 weeks they found a problem with his heart, a trip to the specialist told us that our little boy has HLHS so I know excatly how you are feeling at the moment. For us, we have decided to continue with the pregancy but that doesn't mean that terminating is the wrong thing to do. We have been told that I would really need to have the amnio test done at 32 weeks so they can determine if the baby has a chromosome problem which may not be compatable with life due to the high nuchal translucency measurement which keeps increasing. So at the moment it is alot of waiting around and thinking of every possible situation, which can drive you mad!
My main problem is putting the baby through all the operations and he doesn't pull through.

LittleMy34 Wed 30-Jan-08 13:34:50

Oh sheila I'm sorry to hear of your diagnosis - did you have any kind of chromosome test already (amnio or CVS?) We had a CVS at 12 weeks which ruled out Down's, Edward's or Patau's syndromes, but now they're telling us there's something else called 22q deletion which isn't routinely tested for, which we could have an amnio for.

I'm very impressed with your decision to continue, am feeling worried that if we don't then it will be because we are not strong enough to take that course of action. It might be different if we didn't already have DS1, but I don't feel right about putting him through having his mum away for long periods while this baby is in hospital, plus the fact that we wouldn't be much cop as parents to him while it was all going on. But then again, I could just be scared and using this as an excuse to hide behind....

I hope you get some good news from your amnio and that you manage to get through the coming weeks without too much stress

{{{{hugs}}}}

sheila0 Wed 30-Jan-08 15:43:06

I don't think that it's not a case of not being strong enough at all!!! It's such a hard decision to make and there are so many outcomes and it may not work...... There are so many factors to consider. But one thing for me is that I don't have any other children to consider like you do which is easier for me. We didn't have the amnio done at 12 weeks even though they told us that due to the nuchal fold we were high risk for down's because of the risk of miscarriage (even though it's very small) because we wanted to go ahead with the pregancy anyway. I will have the amnio at 32 weeks and see what comes back.
One thing is that you should not feel like a cop out or that you are making excuses because you aren't, you are just weighing up all the possibilities and no matter what you will pick the right one!!!!!

LittleMy34 Wed 30-Jan-08 16:37:36

Thanks SheilaO and good luck with the amnio.

smile

Saggarmakersbottomknocker Wed 30-Jan-08 16:53:27

LittleMy - please don't worry about upsetting anyone with your decision. You do what you have to do and you don't have to justify to us.

The 22q deletion you spoke of is probably the one known as Digeorge syndrome. It's not an 'incompatible with life' syndrome but is extremely variable. Some people have it and don't know at all, others are much more affected. India Knight's daughter (she's a columnist for the Times if you don't know of her) has DiGeorge.

Sheila0 - good luck with your amnio. There's a couple of links earlier on in this thread that you may find helpful.

Take care both of you.

LittleMy34 Wed 30-Jan-08 17:14:00

Thanks Saggarmakers (you must tell me what the name means sometime!)

Think I'm starting to come to some sort of acceptance of the whole thing, although still prone to bursting into tears at odd moments! Now just have to make sure me and DP are in agreement.....

LittleMy

blueshoes Wed 30-Jan-08 18:27:42

sheila0 and littleMy, I just want to register my support for you both.

I understand about the bursting into tears, even in front of doctors. It seemed that everytime I went for a scan, the doctors would tell me something else was wrong with dd's heart, brain, size (too small), umbilical cord (single artery). And I would just about have absorbed the latest news for a different consultant to tell me a different story at the next visit. It is so hard to diagnose antenatally. I was also brusquely told there could be a genetic defect with dd because of the unexplained cluster of soft markers for all kinds of things.

At the time, it seemed like nobody could understand the rollercoaster of emotions that dh and I went through and the enormity of decisions we had to make.

I am not sure how that helps you. Sorry, I am babbling. I wish you both all superhuman strength. You will get through this.

LittleMy34 Thu 31-Jan-08 08:52:03

So DP and I are pretty much of the opinion that we can't continue with the pregnancy - but now I'm petrified about the actual termination.....sad

and worried whether we're doing the right thing or not. Baby keeps wriggling and i can't quite believe what we're planning to do, but in my heart I know it's for the best. I just wish I could go to sleep and when I woke up it would be all over.

has anyone else been through this that could tell me anything about what it's like?

sheila0 Thu 31-Jan-08 09:16:05

HI LittleMy
Just wanted to wish you lots of love and support in your decision. You are doing the right thing for you and your family. {{{{hugs}}}}

Hi LittleMy

Just wanted to let you know that I am thinking of you, and that you must do what's right for you.
I know that planning a termination now seems unreal and daunting, but if it's the right thing for you to do then I know you will pull through this traumatic time and move on.

Thinking of you sweetheart

China
xxx

nettiehay Thu 31-Jan-08 10:56:28

Littlemy, I can't even imagine what you are going through, but I know that you, your DH and your DC will be fine in the end. You are a brave person and if you can cope up till now with all that has happened, you can cope with anything. My thoughts are with you. x

LittleMy34 Thu 31-Jan-08 11:07:42

Thank you all, I can't tell you how much it helps to know you're all out there thinking of us. Especially you, China, as I know you're only down the road!

(Filthy weather today, isn't it?)

I think we both know it's the right thing and the only thing we can do - it's coming to terms with the enormity of the decision that's proving difficult now. sad

off out to buy ingredients for DP's birthday cake now - managed to have Happy Birthday cards and present this morning grin

Saggarmakersbottomknocker Thu 31-Jan-08 11:51:27

Holding you in my thoughts LittleMy.

aberdeenhiker Thu 31-Jan-08 11:55:22

Hi Littlemy, I just got back from vacation and heard your news today. I'm so sorry sweetie, I'm thinking of you and am sending virtual hugs. Take care of yourself, your DH and your DS!

I'm glad you're finding something nice to do LittleMy.
The weather is indeed grim and I am on my own in the office struggling to concentrate on work.
I really do hope everything now happens for you as quickly and as smoothly as possible. If you need to talk I am always here.
China
xxx

Rolf Thu 31-Jan-08 13:24:54

LittleMy - I lost a baby at 19 weeks - she died in utero. I can answer any questions you have about that if you like, although I'm not sure how similar it is to what will happen to you.

LittleMy34 Thu 31-Jan-08 13:38:13

Thanks Rolf - I'm sorry to hear about your baby. If you don't mind me asking, did you have to deliver her and go through labour? I'm very worried about what that will be like.

LM

lennygrrl Thu 31-Jan-08 13:42:05

Message withdrawn

lennygrrl Thu 31-Jan-08 13:46:47

Message withdrawn

Hi Littlemy, just popped over from due in June thread to say you are in my prayers. When I read about your decision I felt a sense of relief for you. I so hope that everything goes OK and that you have some happy news in the near future.

LittleMy34 Thu 31-Jan-08 14:11:41

Thanks nh101, it's lovely how many of you have popped over to say hello!

Am currently pursuing one more question with the cardiologist. Bump currently doesn't have Hypoplastic Left Heart YET, but has something called Aortic Stenosis which often leads to HLHS. I found a study (very reputable) which lists some other things you can look at to assess the likelihood of HLHS developing, and we want the cardiologist to consider re-examining the scan to look at those things. I know people who go and look up studies on the internet are a real thorn in doctors' sides, but I can't be happy with our decision unless I know we've explored every avenue.

If Bump only had Aortic Stenosis at birth, his long term prospects would be much improved, despite still needing surgery, so it's worth pursuing, although the odds aren't great. In the study, out of 23 babies with Aortic Stenosis at 20 weeks, 17 developed HLHS, so it's a slim straw at best....

Sorry, don't know why that all came out then! Thanks for your supportive messages xx

lennygrrl Thu 31-Jan-08 14:16:15

Message withdrawn

Saggarmakersbottomknocker Thu 31-Jan-08 14:26:01

LittleMy - me again smile You obviously have to cover all your bases. You're absolutely right Aortic stenosis alone is considered a significant defect , HLHS alone is considered severe both together is 'complex' and understandably difficult to manage. HLHS is often visible at 20 weeks so there is a possibility that it won't develop or will be in a mild form.

You're between a rock and a hard place at the moment and I so feel for you.

Saggarmakersbottomknocker Thu 31-Jan-08 14:30:36

I do have an online friend who's child has HLHS complex with a type of aortic stenosis, treated at the Evelina.

I'm not altogether sure that it would help either way to speak to her though (she didn't have an antenatl diagnosis) I think it may cloud things for you further TBH.

LittleMy34 Thu 31-Jan-08 14:33:18

thanks Saggarmakers - the cardiologist said in her experience, this particular level of Aortic Stenosis (she classed it as moderate to severe) was more likely to lead to HLHS than not, but I don't know what she's based that on. It may be that she's already looked at those factors listed in the study, but for my own peace of mind I need to know!

just hope I'm not clutching at straws here.

LittleMy34 Thu 31-Jan-08 14:35:43

By the way just looked at your profile Saggarmakers, so now all is explained about your name. And your DD looks lovely, you must be very proud!

LittleMy34 Thu 31-Jan-08 14:38:13

Think you may be right there Saggarmakers - if we hadn't found out until our baby was born, there would be no question in our minds, we'd go for the treatment - but given that we do know, and we have the option not to put our baby through all that, it makes it a very different kettle of fish.

Saggarmakersbottomknocker Thu 31-Jan-08 14:38:44

Don't you just wish for a magic wand right now? I bet you feel like your head is about to explode with all the questions and emotions rushing around in there.

Oh and an explanation of my name is on my profile. smile

goingfor3 Thu 31-Jan-08 14:41:06

Littlemy take as many studies as you feel you need to to show the cardiologist, it's better than always wondering what if I had asked this...

I misscarried my first pregnacy at 20 and delivered my baby about 24 hours after the first contraction. Physically it probably wasn't as intense as a full term labour but mentally it was very painful. I refused pain relief until the last 2 hours or so, if I had had an epidural ealier on it would have been a great help.

LittleMy34 Thu 31-Jan-08 14:46:15

Thanks goingfor3 - the consultant seemed to think with drugs etc that it would be over in a day, but you never know....I don't have any real idea what it might feel like, as DS1 was induced (curse that Syntocinon, it's an evil evil thing) and so I don't know what normal labour feels like.

Saggarmakers - that's exactly what my head feels like - and if you've got one of those magic wands, send it over here!

wink

Rolf Thu 31-Jan-08 14:46:40

LittleMy - I don't mind you asking. Yes, I have to have labour induced. They used pessaries and it took a few to get me going, The labour probably took a few hours longer than a normal (induced) labour but was in other respects pretty similar. I think I started feeling twinges around 9pm and delivered my daughter about 8am the following morning.

The main physical difference was the pushing stage - because she was so small, the pushing was easy and not as painful as a normal labour.

I had a morphine pump so I could control my pain relief. It also kept me completely spaced out which was what I wanted.

They also gave me something to prevent my milk coming in.

We had my baby blessed and she is buried with my mother.

I would say that although it seems grotesque to go through a labour in that way, it eventually becomes an important part of the whole grieving process. 4 years on I think that it would have been more shocking to go to sleep with a bump and a baby and wake up with nothing.

My situation was different to yours as my pregnancy was going fine, the baby just died suddently and for no particular reason.

I'll say it once and then keep my mouth shut, as I really don't want to cause you any additional pain, but you sound in your last post as though you are not completely sure. There is not a day that goes by without my thinking of my daughter and for a long time I was overwhelmed with guilt and sadness. It put huge pressure on my whole family and on my marriage. If she had died through a termination I honestly think that it would have destroyed me. If this is the right decision for you and your husband, then so be it, but PLEASE don't allow yourselves to be steered down that path by doctors who will go home afterwards and forget about it. My heart really goes out to you.

I'm really hesitating about hitting Post...

goingfor3 Thu 31-Jan-08 14:53:39

Littlemy, it will probably be quite similar to your other induced labour just maybe not as intense. The pain relief I had in the end was morphine and I wished I had started it sooner. The dr gave me the higest possible dose and it knocked me out which was what I really needed. I had it a couple of times afterwards too (very sympathtic dr) but I do remeber waking up after the final time wonder where I was as I was really disorientated and what had happened hit me really hard again. It happened 8 years ago and still upsets me.

I second what Rolf says, only do it if you have no doubts.

marina Thu 31-Jan-08 14:53:44

Rolf, my experiences were so similar to yours, including my feelings afterwards, my heart goes out to you XXX Tom died in utero at 21 weeks

LittleMy34 Thu 31-Jan-08 14:56:19

Thanks for sharing such a painful experience Rolf, and please don't worry about what you said at the end. It's useful to know these things as I do have real concerns about what effect this will have on the whole family. And I think deep down I know what you mean about labour being part of the grieving process - although it might seem easier, I think you're right, it would be strange to go to sleep and wake up with no bump.

My mother suggested considering carrying the baby to term but then not consenting to treatment if he has got HLHS, but I'm not sure I can go through the rest of the pregnancy knowing he is likely to die at the end of it, although I know for some people this is an option.

rock and a hard place.

It is not really for me to give advice and I don't want to confuse you or make things harder or just be a pain in the bum blush but I think if you have any kind of inkling that the docs may be wrong (or giving you a worse case scenario that might not happen) then trust your instinct and go on with the pregnancy.

Without the early nuchal scan you'd never have known there was a problem and would have carried on anyway.

I don't think you are clutching at straws - there are hundreds of stories where people are told one thing by docs and then something else happens.

Trust your instincts and you will make the right choice.

Littlemy, I think you are absolutely right to bring any extra reading to the table. I'm sure that the doctors will be used to it, and appreciate what you are doing.

I also think you are very brave. Either decision would be so hard to make for me.

I am thinking of you.

Love

Upsidedown xxx

Rolf Thu 31-Jan-08 15:04:52

Hi Marina - it's MrsDarcy here.

In the weeks afterwards I remember wishing that I could have some more morphine, and thinking that if I mixed in those sort of circles I would take whatever drug I could to make the pain and sadness go away for a while. It's powerful stuff.

When I was expecting DD a year later, and they found a brain abnormality, we were given a prognosis ranging from "Fine" to "really quite bearable" to "will die in your arms in the delivery room". With most of the conditions diagnosed in utero there are similar gradations of severity, which can't be narrowed down until the baby is born. If your doctors are focusing on one branch of the diagram on which they can mark out the possibilities, they are doing you a disservice.

bundle Thu 31-Jan-08 15:10:06

gosh mrsdarcy/rolf, what an incredible story

LittleMy34 Thu 31-Jan-08 15:38:11

That is quite something, Rolf - how was your DD in the end?

LittleMy34 Thu 31-Jan-08 15:41:41

Have just made DP's birthday cake, fingers crossed it rises as I haven't got time to make another one before he gets home! (and I haven't got enough of the flipping complicated ingredients - concentrated apple juice anyone?)

feeling quite proud of achievement.
grin

Rolf Thu 31-Jan-08 15:54:39

It was one of those soft markers which can mean anything. It was more definite than just a dodgy-looking measurement - she has a part of her brain missing and it is a soft marker for Edwards' Syndrome. So if she had Edwards the prognosis was stillborn or v ltd life expectancy. If she didn't have Edwards she could have had any degree of learning difficulties, from mild to very severe. Or she could develop normally.

So we were looking at a whole range of possibilities and whilst an amnio could have ruled out Edwards it couldn't rule out learning difficulties. In my panic looked at the worst case scenario, as one does.

She is now 2.5 years old and has been discharged by the neurologist, and is completely normal and wonderful. Her brain has worked out its own route for processing information.

Impressed with your cake efforts, LittleMy smile

marina Thu 31-Jan-08 16:02:38

Hello MrsD
How wonderful to hear how well your dd is doing
LittleMy, you are right, it IS a rock and a hard place. We are all thinking of you XXX

marina Thu 31-Jan-08 16:03:22

Oh and hope your dp has a great birthday and you all enjoy the cake

LittleMy34 Thu 31-Jan-08 16:05:25

That's really good news, Rolf, just shows they don't always know what will happen!

I think we have to face the fact that our baby definitely has got congenital heart disease - it's really about how severe it might be, and that's the bit that's so difficult to predict.

cake rising nicely!

grin

If you are sure he has heart disease and are sure you couldn't put him through all that then I think your decision to terminate is the right one. I remember the pain I had from only a MMC last year. I was desperate to get PG again to take the pain away so I can ony begin to imagine what the pain will be like for you. But one day you will have happiness again, like Rolf. Just try to focus on that.

LittleMy34 Thu 31-Jan-08 17:07:01

Thanks nh101 - what's a MMC? sorry, haven't caught up with all the acronyms yet!

I do think about getting PG again but at the moment it just feels like I'm betraying the baby to think like that. I think that'll come later.

goingfor3 Thu 31-Jan-08 18:15:29

Littlemy, I hope you enjoy your cake tonight!

andiemustlosehalfastonemore Thu 31-Jan-08 18:21:51

littlemy enjoy the cake smile

blueshoes Thu 31-Jan-08 18:33:32

MyLittle, I totally agree that it is very difficult to diagnose the severity antenatally. Dd had a cluster of suspected heart defects (VSD, PDA, coarctation) but it was only after 4 months of continuous scanning and uncertainty after she was born that a senior cardiologist finally decided what was wrong and made the decision to operate asap. But I appreciate my situation is different from yours because even the most serious of potential conditions was still relatively easily fixable. I'm really sorry, I wish you did not have such a difficult decision on your hands.

I agree that the doctors need to not just focus on the worst case scenario but also on the better scenarios. Like someone said, they don't like to give false hope (for liability reasons as well), but they don't carry the emotional weight of the decision, the way you and dh do.

Having said that, they are a good team at Guys/Evelina.

lennygrrl, dd is 4.6 now. She had her surgery at 4 months (then Guys), and we are very lucky in that it seems to have fixed things. How is your dd?

LondonBird Thu 31-Jan-08 19:00:38

Hi there Littmy

I couldn't see this and not post, though I haven't posted since last summer (am a shy lurker usually) - sorry likely to be long. I found finding other people had been through the same thing the most helpful thing, and Mumsnet was amazing

Last March my baby was also diagnosed with dreadfully severe congentital heart defects - a vsd (not too bad on its own), double outlet right ventricle (wrongly plumbed arterys) and also pulmonary stenosis. There was no chromosonal reason, we were just extremely unlucky.

We decided on a termination, based on the likely survival rate and suffering that the baby would have had to go through for an extremely uncertain outcome, permenantly patched and operated on, unfixable heart. He or she would have been our first baby, conceived after 2 years and about to start IVF. It was and remains the most painful thing in my life, however, and this is the really important bit, for me and my DH, it was absolutely the right decision, and whilst the grief is huge, I have never doubted that. I suppose some people would say that I have to believe that, having gone through with it, but as soon as we had met with the fetal cardiac specialist and knew just how bad things were, we both knew what decision was right for us.

One thing that really resonated that someone said at the time - whatever decision you make you will do out of love for your baby and also for the rest of your family, and thats all that you can ask for. As well as the likely outcome of the baby dying anyway & horrendous suffering on the way, I also knew that for me and my DH a desperately sick child, potentially over many years, would have been unmanagable, and though that feels desparately selfish, the thing about these type of decisions is about getting to some rock bottom truths about yourselves.

I also found it so difficult because the death of a baby, plus the fact that it was a termination are both such taboo subjects, but I never felt judged. Its also hard because its so public, but you do get through it and at some point find yourself on the other side still reasonably whole.

I can't pretend that the termination itself wasn't pretty awful, but if you'd like to know a bit more about what happens do CAT me (hopefully it still works) and I can tell you what happened with me if that would help.

It is a dreadful dreadful time for you and your DH and my heart goes out to you - all the very best for whichever decision you make, and do let me know if there is anything else I can share that would help

Finally, and I am slightly unsure about whether sharing this is the right thing, (so if its not I apologise in advance) but I want to add some positiveness - 3.5 months after we lost our baby amazingly I got pregnant again, and am now due in March. I might have found someone telling me this pretty painful when I was going through it all at the time, but I wanted you to know that there is the other side of all of this, and I'm sure, based on my straw poll of one (ie me) you will be OK whatever you decide to do

Londonbird - what a brave post - wishing you and dh all the very best with your baby.

LittleMy34 Thu 31-Jan-08 19:29:04

Londonbird - I can't thank you enough for that brave post. It's really reassuring to hear that there is life afterwards, and congratulations on your new pregnancy!

I'm very scared about the actual termination - I know it's something one just has to get through, but I can't pretend not to be petrified. Can I CAT you tomorrow - once I've worked out how to do it? It's DP's birthday today so I'm trying not to think about our situation just for this evening, to try and give him a nice time.

What you said about making the decision out of love for the baby really strikes a chord for me too - my DP also said something last night which made perfect sense. He said it's a decision you make with your heart, and the justifications and rationales come afterwards, but they aren't what makes the decision for you. I think that really helps me, because you can justify either course of action so many different ways, but this sort of decision has to come from the love you feel for your baby. I don't know if that makes sense?

Would really like to hear more tomorrow if you're around

Thanks again
LittleMy

LondonBird Thu 31-Jan-08 19:51:28

Thanks v much NL

LittleMy, of course, please do CAT me - I'm still working so will only pick it up in the evening, but will definitely be around then

Have a really nice evening with your DP :-)

LB

debinaustria Fri 01-Feb-08 08:18:36

Littlemy - just wanted to see how things are today? Take care

Did dh enjoy his cake?

aberdeenhiker Fri 01-Feb-08 08:22:30

LittleMy, I love what your DP said about it being a decision from the heart. I'm having a quick cry at my desk for you and know that with that attitude, you and he are bound to make the right decision for your family

I hesitated to post this, but I do know of an American woman who's son has HLHS and keeps a websites about it: www.babysamson.com/blog/. Her son is now around two and doing well but you might want to search her journal archives. The only reason I'm hesitating is because I know you haven't made a final decision and this is only one side (a happy side) of the story.

marina Fri 01-Feb-08 11:32:28

LondonBird, I remember your posts so well, am so very happy for you that you are pregnant again

LittleMy34 Fri 01-Feb-08 13:28:13

Hello all,

the cake was yummy and we managed to have a nice evening with a steak dinner and cake. DS1 got home from nursery and spied the cake straight away and announced 'Happy Birthday Cake! Like Some!' which made us both laugh a lot.

So we saw the consultant this morning and we both feel we're going to have to end the pregnancy. He sensed we weren't completely able to commit to the decision yet, so he asked us to take the weekend to 'live with the decision' and see how we felt about it. I have to say though, that walking away from the hospital feeling that we had made the decision brought an enormous sense of relief. I think we both feel that we've known what we have to do from the beginning, but have been scared of actually making the decision itself.

I think deep down I've been preparing myself for this ever since they found the high nuchal measurement eight weeks ago, and for me it feels like the end of a very long, stressful and difficult road. Not that the next part will be easy, but am going to CAT Londonbird and contact ARC again to get some advice and support.

Thanks for all your thoughts over the past week - will keep you posted next week, as it's likely to happen on Wed or Thurs. My SIL has offered to come down from Scotland and look after DS1 which will be a huge weight off my mind, as he adores her and she's exactly the right person to have around during something like this.

The sun is shining and it's impossible to feel too sad on a beautiful day like today. An going to concentrate on saying goodbye to our baby and enjoying the weekend with DS1 and DP.

Thanks again
LittleMy x

needahand Fri 01-Feb-08 13:33:18

Just came over from the June thread to say goodbye and goodluck Littlemy. I hope things will work out for you.

Giving you a big big hug and wishing you the best for the future.

Take care

RosaLuxOnTheBrightSideOfLife Fri 01-Feb-08 14:42:39

Littlemy - I don't know what to say except that it sounds like you and DH between you have had the courage to make the right decision for your family and the strength to cope. I wish you all the best for the weeks ahead. <<<<<<hugs>>>>>>

andiemustlosehalfastonemore Fri 01-Feb-08 18:23:09

littlemy i am so glad that you have made a decision you feel comfortable with. Good luck on the journey ahead you are very strong and although it will be hard I am sure you will cope
sending lots of love and hugs your way
take care

Littlemy - will be thinking of you and praying for you and dp and all the family next week. I think you have been really brave and you are both showing yourselves to be truly exceptional parents. Take care of yourself.

goingfor3 Fri 01-Feb-08 19:08:19

Littlemy, I really do hope you have a lovely weekend and am so glad you feel comfortable with the decision you have made and it's sounds as if it's a mutal one. I hope you ds enjoys his time with his auntie. Best wishes for the future for you and your family.

LittleMy34 Fri 01-Feb-08 19:11:19

Thank you northernlurker, andie, rosa and needahand - it means a lot to know you're all thinking of us. Am still having moments of wondering if we're doing the right thing, but I think that's normal really.

you've all been so kind and supportive on this thread, i can't thank you enough. Have some of DP's birthday cake all round!

[cake symbol]

LM x

LittleMy34 Fri 01-Feb-08 19:11:56

oh crossposting - and some cake for you, goingfor3!

majormoo Fri 01-Feb-08 20:00:17

Dear LittleMy, I am very sorry to read of your situation. I am glad to read you are contacting ARC again because, as you have discovered, they are a fantastic organisation and can provide support when you need it. I am a member and still use their email support group although my own termination was a few years ago now. We ended a pregnancy because our baby had Trisomy 13, although this was earlier on, at twelve weeks. This will be a terribly difficult time for you and you will go through a period of grieving for your baby, but you will get through it. In a lot of ways the experience, though dreadful and painful, has had a very positive effect on my life. I hope that makes sense. I will be thinking of you.

LittleMy34 Fri 01-Feb-08 20:49:06

Thanks majormoo - I've only spoken to the helpline volunteers at ARC so far, but they've been really lovely. I tried calling the people they put me in touch with this evening, but they're not in - fingers crossed I'll reach them later or tomorrow.

right now I'm just petrified of getting through it and then regretting it when it's all too late - it's such a difficult choice the idea of getting it wrong is truly terrifying.

goingfor3 Fri 01-Feb-08 21:03:16

Littlemy you've made you decsion based on what is best for your situation, if you ever feel even just a tinge of regret remeber why you had to make the decsion and how it was one you gave alot of thought to.

hatrick Fri 01-Feb-08 21:09:18

Hi littlemy just wanted to say good luck, I have been watching your thread and have really feel for you, I have been blown away by how well you are able to express your thoughts and feelings. I have my heart scan on Tues after high risk nuchal so although I cannot and never would claim to know how you are feeling I am nonetheless thinking of you .

LittleMy34 Fri 01-Feb-08 21:17:01

oh good luck hatrick, I really hope you get good news. thank you for your thoughts as well.

goingfor3, I know you're right, every so often I just feel like the worst mum in the world, and that I should just face up to what life has thrown at us. But it's not just about us, is it? our baby is the one who would have to have three open heart surgeries before he was even at school, and I can't wish that on him. I have to keep that in my mind.

sorry to go on, DP is out and so am sitting here feeling a bit sad sad - have ordered ANOTHER pizza though, and watching a DVD.

I'll probably never eat pizza again after this. wink

goingfor3 Fri 01-Feb-08 21:19:24

Enjoy your pizza! You are not the worst mum at all, you are doing the best anyone could in your situation.

Saggarmakersbottomknocker Fri 01-Feb-08 21:36:14

LittleMy - still in my thoughts. Wishing you strength. x

Hatrick - will be thinking of you on Tuesday.

Littlemy - you are not a bad mother! You and your dp have faced up to a terrible situation - with a guarantee that one way or the other your heart will be broken. You are taking the path that feels right to you to love and protect your children. Be gentle on yourself please.

Upsidedownegg Sat 02-Feb-08 09:18:31

Littlemy- I think you are so courageous. I admire the fact that you are making the decision based on your baby and the rest of your family. I will be thinking of you next week. xx

LittleMy34 Sat 02-Feb-08 18:40:24

so here's a surreal moment - shopping in Waitrose today, i was in the booze aisle, with a bottle of wine in each hand (best friend over for Sunday lunch tomorrow, honest - not for me!) when who should I bump into but our antenatal consultant, clutching beers.....

I hope he didn't think I was off home to drink myself into a stupor grin

aberdeenhiker Sat 02-Feb-08 21:12:44

LittleMy - you sound like the best mother to me! You and your DP have faced up to things in every way. I have so much respect for you and wish you every bit of strength you need in the next few weeks!

Kezza7779 Sat 02-Feb-08 22:42:56

Ive just read this whole thread and littlemy i knew from your first few posts that this was the right decision for you. I felt like you were wanting people to tell you that termination was the right thing to do. I honestly think it is and the decision you have made is a very difficult but VERY SELFLESS one. My dh and i have discussed this senario (due to have nuchal next week) and we KNOW that this would be the rote we would take. something that effects the quality of the babies life would be enough for us. Luckily we havent yet got any other children so dont yet have to take that into consideration but should we of been in your situation we would be doing as you are for sure.
I had a termination many many years ago at 17 weeks and it was a very difficult and sad time. Afterwards i instantly felt like i had made a huge mistake and i was plagued with guilt and emotional pain. After a few days though i returned to my sensible frame of mind and knew i had done the right thing. I just wanted to say that afterwards you are bound to feel like youve done the wrong thing simply beacuse its such a hard thing to do, but once youve come to terms with whats happened your frame of mind will change. Its unlikely youll walk away saying YUP i did the right thing beacuse you will be grieving.
Hve you thought about what will happen do your LO once its born? I made a huge mistake and didnt consider this and to this day its the one thing i regret, i wish i could of had some sort of service and memorial, instead i dont know where he is or what happened to him and thats the saddest part. Just wanted to make sure youhave thought about this part? Anyway sorry for the log post i just wanted to share my experiences with you in the hope it will help you thru this difficult time. Good luck with everything and lots of love and hugs to you xxxxx

Hi Littlemy, it is good to hear you felt relief after seeing the doc last week. I know how you feel about not thinking about getting pg again out of respect to your baby. I felt that way after my mmc (missed miscarriage - at 13 weeks pg), i didn't want to get pg again straight away cos it felt disloyal to the baby i lost. Not that my mmc is at all the same as what you are going through. Not at all. But even that was very difficult so i can kind of understand what you must be going through. I think you have made the right decision for your baby and you and your family. Good luck this week (if good luck is reallly the right sentiment, I fear it is not)

LittleMy34 Sun 03-Feb-08 18:12:22

thank you all, we are managing to have a reasonably normal weekend by just not thinking about it all, as I think that's the only way we can cope right now....

it's likely to be Thursday next week so no doubt will be on here lots between now and then, and afterwards.

thanks again for all your support, it really helps

LM x

bundle Sun 03-Feb-08 19:50:55

littlemy, glad there's some "normality" for you this weekend, xxx

LittleMy34 Mon 04-Feb-08 11:53:27

Hi all,

just to say that we have confirmed with the hospital that we're going to have the termination. We're going in tomorrow to take the initial tablets and sign forms, and then will go in on Thursday for the induction etc.

feeling sick and tearful, but still know this is the right thing to do. I hope noone is offended by our decision - we have thought long and hard about it and really feel it's the right thing to do.

I'm sure I'll be posting this week both before and after, but wanted to thank you all - again - for all your love and support so far. It's been invaluable - even DP has decided MN is a wonderful thing!

smile
LM x

Littlemy - will be thinking and praying for you and dh during this hard, hard week. You are being so brave - my heart goes out to you.

sheila0 Mon 04-Feb-08 12:11:11

Dear LittleMy.
Sending out lots of hugs and support to you and your family right now!

sheila0 Mon 04-Feb-08 12:13:20

By the way..... you are doing the right thing and no one will be offended by your decision as you are the one's living it!

marina Mon 04-Feb-08 12:14:12

Wishing you all the best this week LittleMy, we are here for you whenever you need us
You have made the right decision for you as a family, based on love for all your children. XXX

RosaLuxOnTheBrightSideOfLife Mon 04-Feb-08 12:17:52

I will be thinking of you this week. Don't worry about offending anyone, you have made the right decision for you, and I am sure nobody could possibly disagree.
Rosa xxx

Hi Littlemy, will be thinking of you this week. You have thought about this decision so carefully, with your head and with your heart, I'm sure that you and your dp have come to the decision that is the right one for your baby and your family.

I have good friends who terminated at around 20 weeks following a Trisomy 18 diagnosis. It was a terrible decision to have to make but they talk so positively about the love they had and still have for their little daughter, and the privilege of having had her even for such a short time. They named her and scattered her ashes in a special place, and talk about her a lot.

Wishing you strength and support in the weeks ahead.

andiemustlosehalfastonemore Mon 04-Feb-08 13:05:48

littlemy don't ever feel you have to justify your decision to anyone you are doing the right thing for you and your family
will be thinking about you loads this week and sending lots of hugs and strength
andie xxxx

goingfor3 Mon 04-Feb-08 13:09:11

Littlemy I hope it goes as smoothly as possible. Always remeber you are doing what is rght for you and your family and you are the people who count so don't feel you need to justify it to anyone else. You'll be in my thoughts this week.

majormoo Mon 04-Feb-08 14:55:26

Littlemy, I will be thinking of you. You are in the middle of a strange time, when you in limbo waiting for things to happen, so I hope you are doing OK. As long as you and your DH are sure you have made the right decision, that is what is important.

LittleMy34 Mon 04-Feb-08 15:28:31

Have been rather thrown a loop by a letter from the cardiologist which gives us a bit more hope that the baby might only develop severe aortic stenosis, rather than full HLHS.....not sure where this leaves us! Aortic Stenosis is still a significant heart defect with all the attendant impacts on lifestyle and quality of life, and it would still need some significant surgery early on in life.

But it's not as serious as HLHS, and has less of a risk of dying early on.

But obviously they can't guarantee anything, so it still could be HLHS by the time we reach full term.

Now I'm all confused again and wondering what to do.
sad

andiemustlosehalfastonemore Mon 04-Feb-08 15:45:16

littlemy call the cardiologist and ask to speak to them now the two conditons are different in both surgery and outcomes and you need to feel comfortable with your decision. Call the secretary and ask for an urgent appt if needs be then go up to guys to the fetal cardiology unit there and ask to be scanned they are the largest fetal cardiology unit in europe and will be able to give you the best possible advice the two consultants are Dr Sharland and Dr Simpson there is a link to the units web pages here
there is also a lovely counsellor there (a friend of mine) who is very experienced in talking to couples in your situation
I wouldn't normally suggest this but you really need to feel comfortable with your decision and a second opinion may help you to do that and it is your right to ask for one smile

LittleMy34 Mon 04-Feb-08 15:45:41

My gut instinct is that this doesn't change anything - we knew that there was a possibility that the baby wouldn't develop HLHS, but we felt that even a diagnosis of severe Aortic Stenosis would be something it was unfair to put our child through. But for some reason it's left me feeling as if some sort of outcome where everything is ok would still be possible.

which it isn't.

aaaaaaaaaaaaaaaaaaarrrrrrrrrrrrggggggggggghhhhhhhh!

andiemustlosehalfastonemore Mon 04-Feb-08 15:47:19

littlemy certainty unfortunately is just not possible in these situations which is why it might be worth talking to someone else about it and getting a second opinion
have the hospital offered you any counselling?

goingfor3 Mon 04-Feb-08 15:51:18

Littlemy ask to speak to the cardiologist now! I really don't know what to say as it's such a hard time you really don't nned to hear anything which could confuse the issue. I feel so much for you and am sitting here in tears thinking about all you are going throughsad.

LittleMy34 Mon 04-Feb-08 16:23:56

Have just had a long chat with the cardiologist. Her letter wasn't phrased very well, but she's gone into it all in quite a lot of detail, and I'm sure we're doing the right thing.

The degree of aortic stenosis we have already, at 20 weeks, means that treatment isn't going to be straightforward even if it doesn't progress at all, and the likelihood is that it will get worse, which means that it's going to be a difficult road whatever happens.

so we're back to where we were, but I feel ok about that - it's the right thing to do.

thanks andie, you made me get off my backside and ring the cardiologist! grin

LittleMy34 Mon 04-Feb-08 16:25:03

Got to go and pick up DS1 from nursery now - thanks again you lovely people

x

aiti72 Mon 04-Feb-08 16:51:02

What a horrible rollercoastersad. I too will be thinking of you, LittleMy. You are a very brave woman.

andiemustlosehalfastonemore Mon 04-Feb-08 17:57:39

littlemy so glad you have managed to speak to her you are having a really bumpy ride but you are such a brave person I am in awe of your calmness and strength at such a difficult time

Oh dear - what a confusing day for you - pleased you got to speak to the doctor - and really it's just provided you with extra confirmation of what you had already learnt and dealt with. Will be thinking of you tomorrow and praying for you and dp - how is he by the way?

LittleMy34 Tue 05-Feb-08 12:08:09

Just got back from the hospital, consent forms signed, first tablet taken, the die is cast. It was all ok, although quite tearful at the actual moment of truth. The midwives and consultant were lovely and left us in a room by ourselves to have a bit of privacy.

DP is ok - breaking down every so often, makes me feel bad cause I'm now in my 'get on with it and don't have any emotions' state, which I think is the only way I'll get through the process. But I think he'll be ok, although the actual day will be sheer hell.

His sister is coming down tomorrow to look after DS1, which is fab, as they are very close and she had a MC a couple of years ago so knows what we're going through. And I think he needs someone to talk to who isn't me, as he's being really strong for me but also needs to grieve himself.

Also DS1 loves SIL, so I won't have any worries about who's looking after him while we're in the hospital.

So getting through it - I think now it's all started we just have to focus on getting to the other side in one piece.

LM x

marina Tue 05-Feb-08 12:34:51

I think it is fair to say that dh found the labour and delivery much harder than I did, as you say, we have something all-consuming to focus on.
I was offered valium when admitted 48 hours later and I now wish we had piped up and implored the (wonderful) midwife for some for dh too, just a thought
Have been thinking of you all such a lot
We took a photo of ds1 with us to remind us of the good things in our life

Thinking of you and dp LittleMy. Being able to access that 'coping' state is a wonderful gift to get through times like this. Remember everyone will be here for you later too, if you find it all hits you some time afterwards.

andiemustlosehalfastonemore Tue 05-Feb-08 13:16:53

littlemy thinking of you and your dp loads glad your ds1 will be well looked after while you are in hospital

Thinking of you both - you will get through this.

sheila0 Tue 05-Feb-08 14:31:59

Hi Littlemy
Thinking of you, DP and DS1.
You will all be ok and get through this.

Thinking of you, your last post made me cry. Keep being strong x

bundle Tue 05-Feb-08 15:06:28

lots of love to you littlemy, xxx

duvetwoman Tue 05-Feb-08 16:23:31

so sorry to hear you are having to go through something like this, just be there for each other xx

MyEye Tue 05-Feb-08 16:32:50

LittleMy, thinking of you and DP, wishing you both strength
xx

goingfor3 Tue 05-Feb-08 16:38:09

Little just to let you know still thinking of you.

LittleMy34 Tue 05-Feb-08 17:33:33

thanks, all of you. have been feeling quite nauseous all day but curled up on sofa watching a movie. DP has gone to pick up DS from nursery, so am preparing myself to be cheerful Mummy for a bit!

all your thoughts make a big difference LMx

bundle Tue 05-Feb-08 17:37:18

littlemy, I've been thinking about you today, xxx

disneystar Tue 05-Feb-08 21:29:30

my son was found to have a heart problem at a scan at bristol at 20 wks pg we had a decision to make like yourself lots of info lots of talking to people didnt know what to do he had to have operation they didnt know how many till he was born we decided to give him a chance if he was strong enough we were going to help him it wasnt us having it done and we giving him a chance on life i know this is a personal thing to decide but we were prepared when he was born we knew kind of what to expect we were going to have a sick baby and not focus on the normal things that happen when in hospital like visitors excitement etc if that makes any sense we had to be strong he was ill when born and blue and didnt breathe properly at first i felt sick and cried thinking what have i done to you ive let this happen but my dh was my rock for us both he had 3 heart attacks very early on which were extremely scary he ended up having a double heart bypass as a new baby my son is now nearly 8 and i am so proud of him he knows his limitations he loves rollercoasters with his dad i am terrified and dont watch but we took a chance on him once and im not going to hold him back now he still cant walk far gets breathless and tires easily we have to watch his diet and many numerous things even though it turned out fine aj has to have check ups for life and can have another operation at any time but to be honest i didnt cope when it was all happening i was a mess and cried all the time your decision has to be based on many factors you will not be selfish taking anything into consideration it all matters i wish you all well in the decision you choose please e-mail me if you have any questions or just need to chat take care of yourself x
alanmills001@aol.com

LittleMy34 Tue 05-Feb-08 22:11:30

That's very kind disneystar thank you but we are going ahead with the termination, so I'm not sure it would help. but thank you very much for posting, it's much appreciated.

LM

LittleMy34 Tue 05-Feb-08 22:15:11

sorry hope that didn't sound rude

really glad to hear your DS pulled through and is enjoying life.

LM

cali Tue 05-Feb-08 22:31:17

Dear LM,
have been following your post and have not been sure whether to post or not. If you look at my profile you'll see what I do but that's not why I'm posting.
A little while ago, we had friends who were pregnant at the same time we were, but tragically they had almost the exact same diagnosis as you and your Dp and had to go through what you are having to endure at the moment.
I remember saying to my friend that she would always be her baby's mummy and that no one could ever take that away from her.
Just want to say that I'm thinking of you both and am here for you,
xx

LM - wishing you and dp a peaceful night.

marina Wed 06-Feb-08 10:42:54

Thinking of you today and hoping you managed to sleep

debinaustria Wed 06-Feb-08 12:58:32

How are you doing today LM? Thinking about you .

disneystar Wed 06-Feb-08 13:04:26

LM i hope you are ok and yes thank you my dh is much better now it was a scary time but its over now hes on strict instructions and we have to keep to them which he doesnt like you are a very strong brave woman i respect your courage in your decision you made if i were faced with the same choice as last time my decision would be the same as yours take some much needed time out love each other and try to relax my thoughts are with you take care of yourself x and you didnt sound rude at all

LittleMy34 Wed 06-Feb-08 13:19:35

Thanks all, SIL has come down this morning which is brilliant as have been having long girly natters about it all and feeling that we're doing the right thing. she is fab lady so is being massively supportive smile

so not too bad, had complete breakdown last night and ended up weeping in the bath - I felt like I was in some terrible cheesy film as I just couldn't stop crying and it was really huge sobs with runny nose and all the trimmings - nice. It was quite cathartic though and afterwards it was really clear that I wasn't crying at the decision we'd had to take but grieving for the idea of the healthy baby we thought we were going to have, and also being scared of what's going to happen tomorrow, so I think it was healthy to get it all out.

although I'm sure there'll be lots more weeping over the next few days/weeks etc. sad

so it's up and down, a real roller coaster of emotions at the moment.

it's very comforting to know you're all out there, even though I have no idea what any of you look like! Thanks

LM x

Saggarmakersbottomknocker Wed 06-Feb-08 13:21:04

LittleMy - will be thinking of you tomorrow. I hope it goes OK. x

HI LM, keeping on praying for you and dp here. I'm so glad you've got your sil - sounds like she's being a real rock - and I think the crying is a very good thing as well. The snots not so good - but I think we can stand hearing about it smile
Has dp got some time off work this week and next?

bundle Wed 06-Feb-08 14:16:58

hi littlemy, glad your sil is a great help to you. on my profile (for ltd time only) is pic of my New Hair if you'd like to see it! smile

andiemustlosehalfastonemore Wed 06-Feb-08 14:40:51

littlemy just to say thinking about you loads so glad your sil is there she sounds fab

LittleMy34 Wed 06-Feb-08 19:40:59

So.....quite scared now, but am going to have large glass of wine and go to bed after dinner.

[repeat mantra] 24 hours and it will all be over [repeat mantra]

sad

Don't be scared - there will be good people there to help you through it - and you can do this. You have been so brave, truly inspirational! Praying for you and dp as you face tomorrow.

LittleMy34 Wed 06-Feb-08 21:06:07

Thanks NorthernLurker - am trying not to get too nervous but it ain't easy! I'm not religious although brought up a Catholic, but do find it really comforting that there are people out there praying for me. Any positive thoughts, in any direction, are welcomed!

thank you

LM x

libralady Wed 06-Feb-08 21:16:55

Goodluck LittleMy. Will be thinking of you tomorrow. Take care
LLxx

blueshoes Wed 06-Feb-08 21:31:53

LittleMy, keeping you and your family in my thoughts and prayers. Wishing you much courage and peace in your decision.

LittleMy

Just thought I would stop by and say hi. I am still keeping you in my thoughts and rooting for you to pull through this stronger and braver than ever. Your courage amazes me.

Sleep tight

China
xxxx

libralady Thu 07-Feb-08 06:23:00

Good Luck for today LM

Hope all goes well for you, your DH and LO. Great he's got your SIL staying with you.
Stay brave.
LLxx

debinaustria Thu 07-Feb-08 06:26:15

You're all in my thoughts today LM, good luck.

((((((hugs))))))

cali Thu 07-Feb-08 09:19:45

Thinking of you all xx

Will be thinking of you today LittleMy
(((hug)))
xxxxx

AdamAnt Thu 07-Feb-08 09:24:55

Good luck littlemy x

andiemustlosehalfastonemore Thu 07-Feb-08 09:32:42

thinking of you and dp today littlemy lots of love and hugs
andiexxxxx

aiti72 Thu 07-Feb-08 10:33:45

Thinking of you today, LittleMy..

bundle Thu 07-Feb-08 10:37:11

we're all thinking about you LittleMy, xxx

sheila0 Thu 07-Feb-08 11:15:59

Thinking of you today.
Lots of love and hugs!!!!

lucykate Thu 07-Feb-08 11:25:24

i read this thread last night and it brought tears to my eyes, be strong littlemy, wishing and hoping today goes as well as it can for you, x

LM - thinking of you and your family

blueshoes Fri 08-Feb-08 09:06:29

LittleMy, keeping you and family in my thoughts and prayers

LittleMy34 Fri 08-Feb-08 12:49:14

well, it's all over. home now.

to be honest, it had its amazing moments as well as its terrible ones. Daniel was born at 1.58am today and is just beautiful, despite being tiny.

We left him wrapped in a soft blanket, with the stuffed dog that was my favourite toy when I was little, and had him blessed. Got home and wandered round the garden looking at lovely growing bulbs and plants, and feel that it's time for the life affirming stuff to start. Have done an awful lot of weeping over the last 36 hours!

thank you for all your thoughts and prayers and wishes - they stayed with me in the delivery room and helped me through some of the toughest times

no doubt will be posting again soon
LM x

There are no words Littlemy - but just wanted to say I'm thinking of you xxxx

blueshoes Fri 08-Feb-08 13:38:48

choking back sobs. Rest in peace, little Daniel. LittleMy, he will always be with you.

marina Fri 08-Feb-08 13:42:46

I know what you mean about the amazing moments as well as the terrible ones. Tom was the only vaginal delivery I managed in three pregnancies and that's something that will always be special between him and me.
Have been thinking of you a lot, LittleMy, so glad you are home now.
Bless you all XXX

goingfor3 Fri 08-Feb-08 13:45:26

Littlemy, I've been thinking about you and feel happy that you said you had some amazing moments, they will be ones to treasure forever. May Daniel rest in peace.

Littlemy - so glad you are home. You have chosen a beautiful name for your boy. I'm crying for you and for him - but my prayers are still with you and I know thats a lot more use!

bundle Fri 08-Feb-08 14:37:47

oh littlemy, lots of love to you. I'm so glad you have some special memories of Daniel, xxx

Been thinking of you and your family all week LittleMy. Glad you are home safe and will always have special memories of Daniel.

sheila0 Fri 08-Feb-08 15:00:31

Littlemy, glad to hear you are home now and that you have those special memories of Daniel which you will have forever.

andiemustlosehalfastonemore Fri 08-Feb-08 15:11:54

Littlemy so glad you had some moments to treasure with Daniel lots of love to you and your family
andiexxxxx

debinaustria Fri 08-Feb-08 17:08:36

Right, I can type now I've wiped away the tears! I'm so pleased that you had some special moments with Daniel ,I like the idea of leaving him with a present, take good care of yourself and your dp.

(((((hugs)))))

cali Sat 09-Feb-08 18:41:28

Have been thinking of you all, glad you were able to spend time with Daniel and have those special times and memories to keep,
calixxx

LittleMy
I'm so glad you have managed to find something positive in this awful situation, and you and your partner got to spend time with your beautiful son.
I wish you all the luck in the world and hope that you are able to move on, carrying Daniel in your heart always.
Lots of love and best wishes
xxxxx

LittleMy34 Mon 11-Feb-08 14:32:00

Thanks everyone - we are getting through each day at the moment, sometimes we feel fine and sometimes not! Daniel's cremation will be on Thursday and then we're going to try and go on holiday to give ourselves a break.

Thanks again for all your thoughts

LM x

Littlemy - was just thinking of you and looking for this thread! Am still praying for all of you - I'll do so especially on Thursday sad. A holiday sounds like a really good idea for you all.

marina Mon 11-Feb-08 14:39:17

A holiday is a good idea, ours really helped. Dh and ds actually enjoyed quite a lot of it, I must admit I cried most of the time. But it was still a change of scene and I'm glad we went.
If you can arrange the sort of holiday where you barely need to make polite conversation with well-meaning strangers...we were loaned a little holiday chalet and it was perfect.
Will be thinking of you all on Thursday especially Daniel
Lots of love XXX

LondonBird Mon 11-Feb-08 15:15:12

Hi LM

Just checking in and to say thinking about you lots.

A holiday could be good - we had one and whilst it was a bit like Marina's and I cried a lot and DH felt a bit better, it was good to get away from the day to day for a bit and have a bit of a bubble to start to try and heal in.

LB x

LittleMy34 Tue 12-Feb-08 20:58:45

Hello all,

just a short note to tell you all that we're still alive and well and in one piece. Very up and down emotionally, but we're booking a holiday tomorrow which I think will be a good break - even if I weep at least once a day!

Also wanted to post this poem which we're hoping the minister will read on Thursday at Daniel's cremation. Thought you might like to see it.

Hope you're all well

LM x

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep;
I am not there, I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.

marina Tue 12-Feb-08 21:00:41

That is a lovely poem LittleMy. Thanks for posting it, I hope the Minister will read it for you. Good to hear you are keeping on keeping on. Each day is a little easier than the last, I found XXX

bundle Tue 12-Feb-08 21:01:44

lovely words littlemy, xxx

blueshoes Wed 13-Feb-08 08:17:45

Beautiful poem, LittleMy. You are very brave

debinaustria Wed 13-Feb-08 08:22:14

It's a lovely poem, I hope all goes OK on Thursday for you.

Good idea to have a break - I'm sure it will do you all some good.

Deb

bundle Wed 13-Feb-08 09:36:11

how are you today littlemy? I'm thinking of you as I watch the sun streaming in through the window smile

LittleMy34 Wed 13-Feb-08 13:39:29

It has been stunning weather all week, hasn't it? It has really helped us to deal with this better - we walk to nursery in the morning with Isaac and spot the squirrels in the park, and you just can't feel too depressed when the sun shines like that.

After the cremation tomorrow I'm going to go to the garden centre and buy the brightest spring bulbs I can find, and put some pots out in the garden. We also went to find a cherry tree to plant for Daniel, but they were all too big at the garden centre, so I'm on the hunt for a fruit tree nursery. It seemed ridiculous to buy a 4 foot tree for someone who only weighed 750g! We'd like something we can grow from quite small, it seems more appropriate.

So today is a good day, and our holiday is booked. I still have periods of weeping and feeling desperately sad, but I can see the light at the end of the tunnel.

LM x

Littlemy - I am in awe of your strength in dealing with your loss. Glad to read you have a holiday booked as well. The poem is lovely.
this looks like a good website if you are struggling to find a fruit tree I think that's a beautiful idea.

My girls and I were looking round an old church yesterday - they had candles there so I lit one for you and Daniel. Will be thinking of you all tomorrow.

LittleMy34 Wed 13-Feb-08 16:15:22

Thanks NL - I'll see what they have in terms of trees.

Only strong at some points, it has to be said wink - but thank you so much for your thoughts and I'm really touched at you lighting a candle for us. With all these positive thoughts coming our way, I know we'll be ok.

smile

majormoo Wed 13-Feb-08 19:52:33

Dear LittleMy I hope the cremation service goes as well as it can for you. That poem is lovely.
I really hope your holiday helps the healing process as well.

luvaduck Thu 14-Feb-08 01:29:55

have been lurking on this thread and just wanted to say good luck for tomorrow, i'll be thinking of you.
you sound like an amazing, strong woman
x

debinaustria Thu 14-Feb-08 06:23:25

You'll be in my thoughts today LM. Take care

Deb

libralady Thu 14-Feb-08 08:39:03

Best of luck for today. I will be thinking of you. Hope everything goes well. Think the pem is great and I hope the minister reads it for you.
Take care
LLxx

Praying for you all today.

justjules Thu 14-Feb-08 10:48:02

thinking of you and your family today X

LittleMy34 Thu 14-Feb-08 11:05:03

Thank you all you lovely people - cremation was short and sweet. The hospital had put Daniel in a beautiful little casket with a brass plaque with his name on it, and put a yellow rose on top. The lady who brought him also told us they'd made sure the stuffed dog we'd left with him (my favourite from when I was little) had been put in there with him as we'd asked.

We added two sunflowers from us and a bunch of paperwhites from DS on top, so he had some lovely flowers.

Very short blessing and prayers, and the minister read our poem, and that was it really. I wept throughout but it felt ok to do that, and then we went for a coffee with my mum.

So all ok, and I'm glad we did it even though it was quite difficult to go this morning.

thanks for all your thoughts and prayers, we've been really touched by the amount of support you've all offered us over the last couple of weeks.

LM x

debinaustria Thu 14-Feb-08 11:39:18

Sounds like it was a lovely service.

Deb

bundle Thu 14-Feb-08 11:41:31

oh littlemy, how lovely! the flowers sound gorgeous. be good to yourself, xxx

RosaLuxOnTheBrightSideOfLife Thu 14-Feb-08 11:53:23

I am so glad you had this special moment to say goodbye to Daniel. Like everyone else who has posted on this thread, I am full of admiration for your courage and dignity in this terrible situation. Thinking of you and your family.
Rosa xxx

blueshoes Thu 14-Feb-08 13:20:47

The service sounds meaningful and poignant. All my love and prayers for you and your family.

That sounds beautiful - it must have been very, very hard for you and dp but absolutely the right thing for all of you to have. I hope you can have a peaceful and lovely weekend together and then look forward to your time away.

dlynn Thu 14-Feb-08 17:24:13

LittleMy34--so sorry to hear about your loss My baby has just been diagnosed with Situs Inversus (all the organs are flip flopped to the opposite side) and HLHS. We had gone for an early 15 week anatomy scan due to an increased nuchal translucency. I will soon know the pain you are going through. The termination is scheduled for tomorrow. K.I.T. and I am thinking of you.

dlynn - I'm so sorry to read your terrible news. Will be thinking of you and praying for you tomorrow sad

LittleMy34 Thu 14-Feb-08 19:40:55

oh dlynn I'm so sorry - it truly is an excruciating decision to have to make. I hope tomorrow goes smoothly for you.

We were taken great care of by the midwives, and supported every step of the way, so don't worry, you will be ok. We, and so many others on MN, are living proof that this experience can be got through, even though it seems completely unbearable to think about.

All my best thoughts and hugs go out to you
LM
{}{}{}{}{}{}{}{}{}

bundle Thu 14-Feb-08 22:24:26

oh dlynn I'm sorry.

how lovely to you littlemy, to offer such support at this really difficult time for you, xxx

debinaustria Fri 15-Feb-08 07:20:59

dlynn- I'm so sorry to hear about your loss, hope all goes well today. Take care

LittleMy. I'm so glad to hear that Daniel had a peaceful, dignified service. It was what you all deserved.

Dlnn. I'm so sorry to hear you're going through heartache too. Sending you my best wishes
xxx

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now