Please can all parents of children with Down's Syndrome come and chat to me??

[RememberToPlaywiththeKids]

I was told today at my 20 week scan that our baby almost certainly has DS as i had a 1 in 5 risk at 12 weeks and they found a VSD today (hole in the heart).

I cannot go through a termination - it would torture my soul for the rest of my life.

DH thinks having a child with DS will ruin our DD, DS and his life. He would terminate.

He is accepting my position but I am feeling so alone and that I must be 'the strong one' and I would really love to hear all the positive aspects and stories about having a child with DS to remind me that I am not being cruel 'putting my family through this'.

:(

Hi Devient - I understand what you're saying but I'm someone who asks a 1000 questions and tries to find out as much as i can and slowly slowly my thoughts form. It takes me ages to make any decisions and I'm worried I'll have to with time not on my side and so want to be as prepared as possible to make the decision that's right for us. I gues all I need to know is if from your point of view it is heartbreaking to watch your DS go through it all to the point that instead of just getting on with it all, you are worried about him most of the time, with the surgeries being unbearable for you all.

Wantage - that's a really lovely post and congratulations on your little girl!

Adriennemole - I think I am of the same view that you and your DH were/are.
Those first few weeks and months must have been awfully difficult for you - did you end up in the hospital weekly because they wanted to keep an eye on him or because things would happen that he would need help with? I am so pleased that his surgery went well, how wonderful. Will he have to have another operation do you know?

DS was in our local hospital weekly so that they could scan and keep a check up on him regularly. Although it was tough it was reassuring and our consultant was very suportive.
I look back now and wonder how we managed especially as it was around Christmas and we had two other children to consider but it is amazing how as a parent you can pull through when your children are involved it's like something takes over and you just cope some how.
DS will need no further surgery now we were told at our last scan that apart from his scar you would never known he had had surgery the team at GOS did such a fantastic job.
So far he also has no other health concerns, we have recently had hearing and eye tests which he passed with flying colours so it's all good.

As you said yourself the severity of the DS can't be predicted before birth (and sometimes for a while after) we we're reminded of this throughout my pregnancy but were willing to take a chance.
Maybe it's a bit naff to say but I had a good feeling about my DS before he was born and It's because of him that I am able to take each day as it comes and have become a more relaxed and patient person even a better parent to my children.

Ok, remembertoplay,
Please bear in mind I think my son is usually different from many experiences. However I do feel strongly about people getting hung up on all the positive stories that people tell. If I had of took stock I would be in a very different position to what I am now. We also have an older neice, who want for better words is your typical downs child.
My son was in and out of hospital for the first few years of his life, sometimes blue lighted, due to his heart condition. To hear him you would of thought you were in the room with a wheezy old man. After his second heart op which took 8hours, he is coping better. Still has regular checks to justify the further surgery. To be honest his heart isn't just our main priority.
He also has lung problems, which every winter lead to pneumonia and again a hospital stay, until then he just sometimes needs a blast of oxygen to keep him going. Now because of the lung problems this puts extra pressure on his heart and vice versa.
My son also has a dx of challenging behaviour which is a contributing factor to why his hearing problem has went undxd, his seizures are undxd etc. Due to the challenging meltdowns etc he is also putting added pressure on his heart and lungs. He has sensory processing disorder and has severe problems in all 8 areas. Again some of these problems counteract his heart etc. He is supposed to wear blue lens glasses for his visual and visual processing problems, however won't due to the spd.
He is severly developmentally delayed..he's nearly 10 and functions around 2. He has a stair lift for his mobility problems and he didn't start to walk until he was 5. It is usually 2 though. He also has dx traits off asd, adhd, ocd and odd. Now we are revisiting the autism dx and maybe pda.
Hope I haven't missed anything and I hope this helps, however I do think he is in a minority. Though my feeling was at the beginning the more you put in the more you are gonna get out.....though looking at that I feel if it's not there to give or give just yet it's gonna take a lot longer if at all. I take each day at a time and that all said get him on a good day and he is so funny. Our life has changed dramatically but now I wouldn't have it any other way. He 's shown us a different life. Feel free to ask anything else. When you find out from the scan please let us know and keep in touch. You need support through this. x

Hi - first of all I just wanted to say that I think we can all sympathise with the shock that you are feeling right now; it does take time to come to terms with everything & the only advice I can give to you right now is to take some time to be kind to yourself & your husband, you will get through this - it is a horrendous time when you first receive the news, but I promise you it will get easier in time

I am the v. proud mum of a beautiful 6 month old girl with DS & VSD, so i do know what you are going through. We didn't find out until after she was born, so whilst at first it was a huge shock (I'm now embarrassed to admit that I cried solidly for half an hour when I was first told), it was probably much easier for us as there was no decision to make.

I found using this forum to be a huge support in the early days as I struggled to come to terms with it all, along with the hospital support you will receive.

In terms of the VSD - I'm not sure how much they explained to you about it, but you're lucky (I know it won't feel like it at the moment), as this really is the mildest form of heart condition and usually heals itself with time. DD had nurses come & visit every week for the first 3 months, but she's now OK & the doctors believe the hole has already healed itself so no further action is required.

With regards to the DS - it's too early to say how severe this will be, but all I can tell you is that at the moment she is developing in line with 'normal' children of her age and we've not noticed any obvious development delays; she also has the most beautiful smile & giggle and is incredibly affectionate - She is currently sat on her bouncer bashing the soft toys and blowing raspberries at anyone who enters the room before bursting into fits of giggles.

I'm happy for you to contact me at anytime if you have any questions or just need some moral / emotional support.

Take care of yourself!

Devient - thank you. Can I ask what you meant when you said 'If I had of took stock I would be in a very different position to what I am now'.

You all sound amazing and an inspiration really. I think it is your story that I am afraid of. I know that if we discovered all that after the birth, we would just get on with it but we are in the position where we will know (hopefully) the full extend of the cardiac issues (which can come with lung problems as the 2 are so closely linked in the way that they work). I need to somehow get to the bottom of how fair it is to knowingly bring a baby in to this world who has fallot.

Like Adriennemole, I am prepared to take the chance with the DS bit. Having said that - my hunches with all my pregancies have been right. I wasn't worried at all for the first 2 and they were all straightforward and babies fine. I knew something was wrong with my MMC and again with the next miscarriage and with this one I have just been overwhelmed with the feeling that again something is fundamentally wrong and that there is something really serious / incompatible with life going on.

At the scan when he just said VSD (but I heard them muttering about the overriding aorta but they couldn't decide)and that it was all straight forward and simple etc I just felt so relieved that I wasn't going to have to make a horrible decision. I felt peace.

But now I'm back to thinking that they'll confirm more at the next scan and I'll be back to having to make a horrible decision and not knowing if I can etc.

Remembertoplay, As others on here have said please take time to rest and take care of yourself while the news sinks in.

I talked before about the dark places I visited when pregnant and although I'm glad we found out prenatally so we had time to prepare, the thinking, worrying and anguish over whether we'd done the right thing was always there and though it got easier as the pregnancy went on I did have bad days.

I remember worrying like mad before every scan especially the cardiac ones worrying if the problem had worsend or even if he was still with us.
I remember breaking down whilst queing with a friend in John Lewis (of all places)because I was convinced my waters had broken and I was going to lose him. It's hard to admit now but when my mind wandered I found myself thinking of funeral songs and readings .
Luckily through it all I had no end of support from friends and family who encouraged me to take time out both with my DH and DC'S but also by myself. I did all the 'normal' preparing for the baby stuff and I did laugh and I was excited by his arrival.
By the time he did arrive the bond I felt I had with him was undescribable, the birth amazing and I was at peace with our decision.

How you're feeling now is completely understandable but remember to try to take each day as it comes, take comfort from those close to you and treat each scan and appointment as the next hurdle which when overcome is an achievement to be celebrated.

Hello Remember

I don't know much about Down's Syndrome, but thought it might be helpful to tell you a little about my son.

My son was diagnosed antenatally with a very complex heart problem which, at the time, was regarded as terminal, with only 'experimental' surgery available. We couldn't face a termination. He had his first open heart surgery at 23 hours old and has had 5 major operations in total. He is now 14 and a wonderful, bright, sparkling young man.

Forgot to mention heartline.org.uk is a great source of information for parents of children with heart conditions. There is also a forum there where parents discuss their DC's different heart defects, support each other and talk about thier experiences of surgery etc and there is also diagnosed postnatally section. HTH

Thank you both so much and Andrienne you are very right about the getting through each scan thing. i keep thinking the next one will reassure me and then I can relax :(. Thanks loads for the heart link - that's exactly what I need because it's the cardiac possibilities that have really thrown me. If baby has Down's with a VSD, then I can look forward but if it's more than that then the thought fills me with panic but I can look in to it now.

Heliantha - thank you and you must have been to hell and back when you were told. Do you mind me asking what condition he had? Will he need further ops? You sound really lovely.

I am really appreciating all your posts - thank you so much!

Remember - my son has Hypoplastic Left Heart Syndrome, which basically means his left ventricle failed to grow properly. His heart now works by using one pump to do the work of two. He's not expected to need further surgery, but who knows? We have learnt to, mostly, enjoy the 'now' & not worry about what might be (not as easy as it sounds, I know).

From what I understand of Fallot's Tetralogy, most hearts can be 're-plumbed' to work properly, so the surgery is deemed curative. Although this doesn't make sending your baby into surgery any easier, I assure you that you will find the strength from somewhere to get through, if that is what you decide.

I thought you might like to hear something my son said last night: he asked me about Down's Syndrome because it was mentioned on QI (something about the hand fold)& wanted to know about the likelihood of having a child with Down's Syndrome or a heart condition, particularly for him & his brothers. After a short discussion, he said, "It must be quite nice having a baby with a condition of some kind...because you know straight away that they're special". This from a child whose condition has meant prolonged stays in hospital, numerous interventions & limitations imposed on him. Although I've always known we did the right thing before he was born, his words really brought it home.

Remember - my dd also has a complex heart condition. She wasn't diagnosed antenatally so I can only sympathise with you on that score. She was given little chance of survival on diagnosis, transplant was mooted but ironically she was too sick. She's doing well - 17 next month.

TOF certainly isn't the end of the world heart condition wise and knowing what I know I personally wouldn't terminate for it but obviously the additional issues with DS will play a part in your decision. It's a hugely personal decision. I'm sorry you have to face it.

Hello there,

I have a son who has DS, Charley is 11 and goes to mainstream school where he has 30 hours support. He is doing so great, and is a wonderful person. Yes he has a moderate learning disability, but with support and opportunities he really is making fantastic progress. He is going to mainstream secondry school next year; we have just been for a look round and there is so much inclusion support and extra help these days. I'm hoping that he will be doing his GCSEs along with his peers when the time comes too

Charley is a member of the family, just like the rest of us; there really is no difference. He leads a very full and active life: going to Gymnastics, swimming, school, clubs etc. We are currently supporting him to do things like fix himself a snack; he can use the computer independently, read (he absolutely loves books), play, and use the dvd player independently, he's fine he really is.Oh yeah, language and communication can be (is) an area which needs plenty of extra intervention. Charley has always had a private speech therapist (bit pricey but well worth it),and his speech is brilliant. He communicates using 5 or 6 word sentences fairly fluently. His communication is getting better all the time

We find DownsEd really really great for educational advice. They are an international research group providing loads of excellent resources and advice for families and individuals who have ds. They are based in Portsmouth, but are on the internet; have a look

Charley was a wonderful baby too , sooooo easy and is a perfect son, there really is NOTHING that we would change about him. He has loads of friends, and is very popular at school, Charley really enjoys life

Its difficult to express everything here, if you would like to ask anything specific, just mail me ([email protected]), i'd be happy to tell you anything that might help.

I hope this helps; yeah its going to be an anxious time, but try to be positive, and most of all enjoy your child's babyhood. I spent too much time worrying about Charley's future, and as a consequence his babyhood sort of whizzed by and I'm sad about that.

The positives outshine any negative about a million to 1

with much love, Tracey

TOF where DS is a factor is more severe and more often than not irrepairable. Like I said earlier, my son has been allieviated rather than cured.
Even still for those TOF patients who are not DS the outcome is a risk, with a lifetime of follow ups and possible inteventions and re-operations.
Having said that TOF and HLHS were both deemed not to be operative let alone alieviated. Medicine and surgery have progressed immensly. I'm just hoping by the time my son needs his next op in a year or so it may even be keyhole!!
Also my sons heart condition isn't helped by the additional problems that comes with his down syndrome etc.
I know this is a really stressfull time for you and not an easy decision to make but keep asking the questions.
Plus you don't know what the future will bring until you are travelling down the road.
Take care x

As for the comment "if I took stock I would be in a different position to what I am now".
I meant if I didn't take each day as it comes and listened to all the so positive stories of down syndrome being a bit delayed compared to your average child with a few more hospital appointments etc I would of been feeling a lot worse than what I am now. If I had a foresight into how much my future would change and the things my son and my family would go through, it would of come more as a shock.
Sorry if this all sounds like gobbledegook, we had a night of respite and went to a party. We are in the middle of a behavioural crisis due to the seperation and attachement issues he has to the house. Feel free to ask anything, stay positive, like I said I think my son could be in the minority and my niece who has down syndrome, although no major health issues is quite capable. XX

Hi hope things are a bit more settled for you now.

We had a similar situation to you - a 1 in 35 nuchal scan which made us seriously consider what we would do if... and whether we should have amnio of CVS

I quickly realised that I couldn't terminate - despite fearing that it might ruin our 3 year olds life. My DH didn't want to continue.

However, when given a few days space and time to consider DH came to the same conclusion. The interim period was however awful.

We decided against CVS and amnio as they're didn't seem any point putting the pregnancy at risk if we weren't going to change anything.

In the end Henry (the product of said pregnancy)did have Downs (and gastric complications). Although the first weeks were awful (he needed an op at 36 hours old)and we still don't know what the future holds we don't regret our decision.

He is a very easy baby. I've started weaning today because he's cried a bit over the last few days so I knew he must be starving - oh and he woke up at 6.30 rather 7.00. So to date his impact on his brother has been much less than that of other friends who've recently had babies. So far it feels like a blessing more than a life sentance x But who knows what the future holds.

Good luck xx

Thank you so much again everyone for all your posts and sorry I haven't replied sooner - I have been reading and digesting.

For those of you who have kindly offered your details for me to contact you personally. Thank you and yes please, I would really like to. I don't know when I will - I feel as if i'm now on hold until the next scan on tuesday and that I've asked everything that I can at the moment but I know I will have more questions next week and even more once baby is born

Dizzy - can I just ask - how old is Henry and were his gastric problems diagnosed after birth and if so how?

DH is feeling much more settled now but is very hung up on finding out what life is like for adults with down's and he keeps saying that he wants to see some negative reports to make him feel that he's getting a balanced and realistic view.

I am a full time nanny to a 6 year old boy with Down Syndrome and his younger brother

Yes he has appointments, speech therapy etc..
But he's doing great at mainstream school, goes to gymnastics/kumon /playdates/ parks/etc.. like everyone else, and he makes me laugh everyday!

Hi Remember,
I'd be happy for you to contact me, if you log in and click on message poster you can send a private message.

You mentioned in your last post about your DH wanting to know more about adults with DS.
This was something I thought about a lot whilst pregnant and still find myself wondering what the future will hold for my ds although I must admit I worry more about my older two going off the rails at some point!

The adults I do know are mostly young adults and those under 30 and they have pretty varied lives. Some work, some go to college, the majority live semi independently or independently with friends, some are in relationships and one guy I know passed his driving test a few years ago.
I also know a couple of young adults who are more severly affected because of health problems and other learning disabilities. Their parents were happy to talk to me about the exra needs whilst I was pregnant, they wanted us to have a balanced view about having a child with more severe problem.

It is also worth remembering that most adults over 30 or so had very limited opportunities when they were born, If the child did stay with their parents there would be very little support and services and health care would be limited.
Things have changed a great deal over the past 25 years thanks to charities such as the DS association and parents campaigns so who knows what the future may hold.

Hi remembertoplay,
I'm really pleased thet you and your hubby are discussing everything.
I agree with Adriennemole about not knowing what the future holds and how times change.
Though not negative as such, a few profs have told me the prognosis for my son. They hope he will be hitting around the 3-4yo level at 15, he will be someone you see as an adult who is out with a couple of carers and live in a residential care unit, where there is maybe a couple more residents and people cook etc for him.
However and I know I have said this many a time, and it's only there if they are able to give, but hopefully with hard work, care and passion maybe the prognosis will be wrong!!
HTH, and tell DH to ask anything, you can also pm me.
Take care both of you x

That's very true about opportunities being very different now. I have to say though that I do worry that as 90% + of babies with DS diagnosed prenatally are being terminated, that it will be harder for any person with DS to end up in a relationship.

Devient - we saw such a person at the zoo last week and DH was VERY interested to see them and he was rather annoyed that the carer seemed a little distant from the chap - which i took as a good sign as it shows DH is getting rather protective and up for fighting his corner for his child if needs be. I'm sure the carer was fine, they were just having some quiet rest time over lunch.

A friend told me that she's going to send her 4 year old to a private primary school because the local (very very good state school which we fully intend to occupy with all our kids) includes people with SN and also has children that can't speak english initially and she's worried that their probably bright daughter will miss out due to spread of attention amongst the group. I had to bite my tongue. Even before all this with us, I do think that life has far more valuable lessons to learn that pure academics and I so want our kids to realised that we are all different, all have different needs, all have different backgrounds etc and to be part of a big team - I would be appalled if my kids thought they were above anyone else or were part of a tribe where everyone is the same.

Sorry - I'll get off my soap box.

Hello again everyone.

We had our follow up cardiac scan today and where they thought baby had a VSD, the cardiologist from GOSH has diagnosed a version of an AVSD but it isn't a full one if that makes sense. They don't anticipate diagnosisng any further complications or defects.

Anyway - they were all very positive about it and said that it's really easy to fix - just one operation, 2 max and would be done at 6 months of age ish. This diagnosis again significantly increases the likelihood that baby has Down's Syndrome.

I feel so relieved to be honest as I had got myself so worked up about baby being really sick but that isn't the case.

DH is very sad but resigned I think.

I just thought that I would let you all know after all your fabulous support earlier.

I feel now that I can get on and enjoy this pregnancy and look forward to baby arriving for the first time. I am still swinging between feeling terribly sad and 'why our baby' but although that's not very constructive, I can't help myself. Lots of friends are pregnant at the mo with their 3rd, like us and their scans have been 'normal'. I do feel jealous. I guess i would be abnormal not to. I do realise though that we don't know our baby yet. I'm hoping that will make all the difference.

I'm glad you got 'good' news about your baby's heart today Remember. Obviously it is all still such a worry for you but a partial AVSD is repairable.

It's totally normal to be envious of others' apparently trouble free pregnancies. Be kind to yourself and enjoy the rest of your pregnancy. I'm sorry - I should have said congrats when I posted before. My bad manners.

enjoy your pregnancy!

Just got back from a weekend at Foxes Academy which is hotel that is also a training college for young people wih learning disabilities. Were lots of gorgeous young girls and boys with DS who were serving and cooking and servicing rooms. Was really inspiring to see how proud and prefessional they were.