Hypoplastic Left Heart Syndrome

[NatzCNL]

Hello,
Yesterday we went to Kings College Hospital for a repeat 12 week scan and a CVS due to increased fluid on our babys neck and head.
During the scan the sonographer called the consultant Cardiologist in to look at the babys heart (we knew this would happen due to the amount of fluid from the NT scan, 9.8mm).
The Cardiologist diagnosed Hypoplastic Left Heart Syndrome, and told us it was very severe. She advised us to go ahead with the CVS to help us make our decision as to if we would like to continue with our pregnancy.
Is there anybody out there who has had to go through this too? What choice did you make?
We are totally heartbroken and dont know what we should do for the best. We dont want to say goodbye to our baby, but at the same time, we dont want to bring a baby in to this world who is going to suffer and - using the words of the cardiologist - will not be guarenteed survival and if does, the heart will never be fully functioning. We know there are operations they can do, but from the discussion with the Cardiologist, she didn't seem to think this would give us much of a chance, and advised us that heart transplant would be the better option, if we could get a donor.
We have two young daughters at home, and we are worried about introducing them to a new sibling who they are most likely going to lose.
Any experience or advice, please??? :(

BTW we had the CVS, prelimary results shoud be back on Thursday

Hi NatzCNL, so sorry to hear that you are going through this.
Three years ago our first DD was diagnosed with HLH. We didn't find out until the 20 week scan as we had only had a dating scan at 12 weeks. We decided not to continue with the pregnancy. As far as I recall (and it is all a blur I have to be honest) we weren't offered any further testing, but for us the HLH was enough in itself. I had a lot of thought processes about it, and I would be more than happy to share them with you if you would like, but I don't want to be too emotive and sway your thinking. The bottom line for me was that her little heart did not work without massive medical intervention, and eventually a heart transplant. It felt too much to expect her to cope with. We also considered any future siblings (she was our first born) and the impact it would have on them.

Our beautiful daughter was born and died at 22 weeks, she was perfect in every way except that her little heart was broken. We grieved her, we still remember her and on her birthday each year we spend some time thinking of her. She changed me in many ways, taught me that I am stronger than I thought possible, bought us closer together as a couple and made us strong. All these things I hold dear to me as they are her now, in me, in us. I don't regret my decision for a second.

Sweetheart, take care of yourself and hold those you love close. This is a horrible decision to have to make, and I really feel for you. Talk to your partner. If you want to know more about how we made our decision or have any questions, let me know.
Thinking of you.

Natz, i dont want to read and run. heaertline is a fab forum, full of parents who have been through what you are going through

i can tell you about heart transplant, as dh has one. the odds are very good for heart transplant as opposed to some other transplants. but its a very worrying and stressful time to go through. again parents on heartline will be able to tell you more from a parents POV.

Hello Natz

I have a son with Hypoplastic Left Heart Syndrome. We had the diagnosis before he was born. He is now 14 & about to embark on his GCSEs. Although it has sometimes not been easy dealing with his heart condition & the limitations it sometimes puts on all of us, we have a very 'normal' family life. My son is a bright, lovely boy who has a very good quality of life, contrary to what many medics still unfortunately expect. We had a 2 year old at the time of his diagnosis & have had 2 more children since.

I am also a trustee of Little Hearts Matter (www.lhm.org.uk), which was set up originally to offer support to families with this diagnosis & now gives help to anyone affected by a single ventricle disorder. We have an antenatal pack, which includes interviews with families who have made decisions like you face, & can arrange for you to talk to someone if you'd like to. Please get in touch.

I do understand how devastating this news is for you, but please know that there are people here to support you & help you through your decision, whatever you choose.

With much love x

Thank you all so much for your advice and sharing your experiences with me. Jeffily, I am so sorry for the loss of your daughter, having to make that decision so much further into the pregnancy must have been so awful for you both. That is something I fear so much which is why I need to make a decision soon.
Heliantha, I would appreciate any information you could pass on to me. I will log onto your website, thank you. And thank you misdee, I will also look into that site.
Until our results are back next week, we just cant make a decision.
Every expectant parent wants a 'normal' baby, and after two healthy uncomplicated pregnancies and births, and two gorgeous little girls, we were so shocked to find out our baby had so many problems. The blood test we had done with the first scan came back with high risk of Downs, 1:70 chance, and the Cardiologist and Sonographer yesterday seemed quite convinced the HLHS was a factor linked with a chromosome syndrome.
Thank you so much for getting back to me. I will let you know how we get on with the CVS results.
Love and best wishes to you all x

It's unusual to get a diagnosis of HLHS so early in your pregnancy, but you are right to wait until you have a clearer picture of your baby's full diagnosis. HLHS is occasionally linked with other chromosomal abnormalities but this is not common.

You don't need to think about the various options for you & your baby yet - give yourself time to get used to today...

x

Hi Natz

Just to let you know that I'm thinking about you and hope that these last few days haven't been too awful. Whatever you choose, you will get through it, even though all options seem dreadful at this point. I hope you've had a look at the Little Hearts Matter site and can see that there are lots of families out there who have dealt or are dealing with similar challenges and that some of us have happy, healthy children, even after facing seemingly insurmountable odds.

Take care, and lots of love.

Thank you Heliantha, we are still waiting to hear back. I had a really big bleed on Friday after the CVS, so had a scan on Tuesday to check on baby, he/she was still there wriggling about.
Such mixed emotions as I really dont want to have to make any big decisions, but at the same time, Im a mum, I want my child to live and be healthy.
I have been on Little Heart Matters every day, and printed off so much information (also for my family as they have been quizzing me on the condition, and Im no expert!)
This last week has been so agonizing. My heart is racing every time the phone rings and neither I or my DH are getting much sleep. My gorgeous daughters are keeping us occupied, and are innocently unaware that anything is going on at all (aged 2 & 3) so helps us just be 'normal'.
It's after bed time and through the night that we are struggling.
I am going to ask for a re-screen as your comment on it being unusual to get such an early diagnosis is also playing on my mind (not that it's a bad thing).
I will let you know when we hear back from the hospital. Am really hoping it's today, they said either Wednesday or Thursday, but get the feeling that due to the bank holiday everything will be delayed.
Thank you again x

We had a phone call a little under an hour ago. Our baby girl has Turners Syndrome. We are waiting for an appointment with a consultant at our hospital, hopefully today, to go over all the results.
The midwife I spoke to this morning from Kings college told us that the syndrome, along with the HLHS means the baby's chance of survival is very low. She told us that the baby may not survive the pregnancy. She said that we will now have to decide whether we terminate the pregnancy or continue and let nature take its course.
We are totally devastated.

Natz,

I'm so sorry. My sister had a pregnancy diagnosed with Turner's syndrome. She chose to terminate as was told that the baby probably wouldn't survive the pregnancy or if it did would die before its 1st birthday.

Have you come across ARC, good website for antenatal testing and choices following diagnosis. Wishing you all the best.

www.arc-uk.org/

I am so sorry Natz....thinking of you x

There is a Turner's Syndrome website here which seems more positive.

www.tss.org.uk/index.php/what-is-ts

Oh Natz, I'm so sorry. It is so hard to come to terms with any problem with your baby, & to have this added challenge is extremely difficult. I would suggest that you need to speak to a specialist team about your baby's specific diagnosis & prognosis (King's is a fab hospital but it is not a specialist fetal/paediatric cardiology unit). If you ring the LHM office 0121 455 8982 we can help you with that or ask King's for a referral to their usual specialist cardiac unit.
As you know, we have families in Little Hearts Matter who have made all kinds of decisions for their children, including having the baby and not opting for surgery. We also have families with children who have HLHS and other difficulties. Others choose not to continue with the pregnancy. We are all part of the same 'family' & will help you in whatever way we can.
With love x

Thank you all for your messages. We have pretty much made up our mind what we will do, we are seeing the consultant at our hospital today so we can get our heads around this.
You are all such an amazing support, and Heliantha, the LHM website is fantastic and so informative.
xxx :( xxx

Thinking of you both. I hope today brings you some answers x

I posted this on my other thread, but just wanted to let you know what we have decided to do:

After our meeting with the consultant on Friday and after having had some questions answered that had been racing around in our heads, we have decided to go ahead with the termination on Thursday.
We were told the chances of our baby surviving the pregnancy were low, let alone once she arrives into this world.
This is the hardest decision we have ever had to make, yet we know this is the least painful way of losing our daughter and protecting our other two daughters at the same time.

You have all been wonderful with you advice and support.

We have given our baby a name. She will always be a part of our family, and I dont want to refer to her as 'baby'. Her name is Cara. I am dreading the coming week, and months that will follow.

Natz, Thanks for coming back and posting. I wish you all the best for Thursday and hope it goes as well as these things can. So sorry for you that Cara isn't strong enough/well enough to make it.

You will get through this and though I don't believe its ever something that you "get over" the pain does lessen.

Natz, be safe in the knowledge that Cara is loved and will have a special place in your family, always. I shall be thinking of you this week, especially on Thursday x

Thank you. We saw our GP today, and I am so glad we did. She explained everything in detail to us. She went through the report from Kings and explained exactly what everything meant (were all medical terms which we had little understanding of). As well as the Hypoplastic Left Heart, Cara also has many under developed parts of her heart and blocked valves. Our GP explained that the heart could fail at any time and although there are procedures to help correct the hypoplastic left heart, there are also so many other things that need repairing/replacing that the only viable option would be a heart transplant, if she could survive that long. Also due to the lack of oxygen being pumped to all the developing organs, she would be severely under developed and sick.
Although this is still heart breaking news, it helps us come to terms with our decision.
Our GP spent 40 mins with us listening and explaining. I am so glad she requested to see us because today has made me feel so much stronger. I didn't see the point of speaking to the GP before but Im so glad I agreed to the appointment.
She has also told us she will arrange counselling for us and wants to see us again in a few weeks to see how we are.
She also gave us lots of info on Turners, just so we can learn more about our little girl.
xxx

Thinking of you today NatzCNL x

Thank you.

Yesterday we had the termination. It was an awful day, but the staff at the hospital were amazing.

Feeling very numb today, completely different from yesterday. Cant quite believe it is all over. Feel quite empty but very calm. We just have to wait now for final reults and meeting with Genetic Counsellor to discuss future chances of problems.

Thinking of you Natz at this time. I remember how unreal it all felt, and the worry about the genetic results. I hope you find peace soon. Sending you lots of love and thoughts.xx

Thank you Jeffily. I had my first emotional release today. Had been feeling totally normal and untouched by everything that had happened.
As I soothed my 3 year old to sleep tonight (something I rarely do as she is so big now) I remembered how I used to have to rock her to sleep as a baby, and looked over at my sleeping 2 year old and remembered how my eldedst DD used to peer into her crib when she was newborn, and I melted into floods of tears, feeling cheated and grieving for the future we should have been looking forward to.
In a way, I felt so relieved to be feeling again. I finally understood today that the guilt feeling Ive been waiting for will not come. Our baby was never going to survive, and the choice we made was the only choice we could.
I have started reading posts in this section and have seen what you have been going through. I am so happy your Amnio results came back clear. And I am so sorry about the loss of your daughter to the same heart condition our daughter had. You may have told me this in my other thread, Im sorry if I did not acknowledge this, I hadn't realised just how out of it I have been in the past 3 weeks.
We are waiting for an appointment with the genetic cousellor, we should get a date in a couple of weeks. Our daughter will be creamated in October - the day after her daddy's 30th birthday.
I have started to imagine how she would have looked and have begun questioning our decision to not continue the pregnancy. Purely selfish reasons. If we had carried on, I would have got to see her face, and kiss her goodbye. But there was no guide as to how long her little heart would have held out. It may have only been another week, it may have been a few months.
I miss her, although I never met her. And I miss the future we should have had. I feel sad for my two DD's as they have lost a sister they should have had. Although they dont know, but one day I will have to tell them, and the thought of this is breaking my heart.
Sorry for pouring this all out. Just feel like my emotions are awakening and I need to let them out. My DH talked with me tonight, cuddled and listenend. But we are at different places emotionally at the moment, and I not upset about that at all. I just worry about when he will begin to 'feel' again, and hope it happens when he is at home, not at work.
Anyway, jeffily - wishing you all the best with the pregnancy xxxx

Ive just re-read my thread, and have seen I had replied to you earlier - sorry, as I said, not really been with it recently. Still a bit all over the place, although the tears have now finally stopped.
Thank you all for your messages :)