Just had amnio result - would welcome some support

[dreamingoflamu]

hello all
Sorry to bring a sad thread to the pregnancy board. Last week at our 20 wk scan our lives changed completely when we were told our babe had a serious heart condition (AVSD), we then saw specialists who confirmed this and found several soft markers for downs also.
Had an amnio last Tuesday and after the most hideous wait I have just been told that I am carrying a downs baby. I feel calmly numb at the moment - but there have been lots of tears over the last few days. We have a huge decision ahead of us, one I wish I could make go away.
I've done lots of reading, contacted support groups and have read archived MN threads which have really helped. But I could really do with some words of support, I'm so scared no matter which route we take.
we have a 17 month old ds who is keeping us sane and even smiling, but would really welcome some wise mn words
thanks

aahh, thank you ladies. Worth blowing my MN cover for.

My own personal concern would be more over the heart condition, and the likely prognosis, if known.

It can be very very hard for parents of children with DS and heart defects and not all do survive. I know people who lost their darling daughter at 2 because of the Downs / Heart convergence. I'm sure the success rate is increasing all the time, and Eidsvold's dd is a wonderful and marvellous testament to children who go on to lead healthy lives despite severe problems at birth.

I'm not trying to be cruel or negative, but the things Dreamingoflamu is facing may be quite daunting - sorry, what I'm trying to say in a terribly clumsy way, is, Dreamingflamu - we're not making light of what you ae dealing with - and I have the utmost sympathy for you during this time of finding out, and waiting. I did the waiting - i didn't have to take on board the things you are taking on board now - but heaven knows the waiting and weighing up options was hard enough.
XXXXXXXXX

(Geekgrrrl - she's absolutely gorgeous - what a fantastic photo!)

(lovely article, thanks for sharing that with us all Geekgrrl )

Blu, the heart defects commonly seen in children with DS, such as AVSDs and large VSDs, are pretty much the safest major heart defects to repair, and can usually be repaired fully.

I think mortality rates for these are very low - I know this is only anecdotal, but like eidsvold I had a lot of support from the Down's Heart Group, which also has a supportive, v. active email list with hundreds of members worldwide. I was on there for 2 years and during that time three babies sadly died, one of whom had been born 15 weeks prem, one who had a different syndrome on top of the DS and a v. rare heart defect related to this other syndrome, and one who lived in a country where heart surgery was not performed on children with DS. We all pulled together for this last one, donated money, lobbied surgeons, organised a bridge of life flight to the USA for surgery, but unfortunately by the time it was done his heart was in too bad a shape and he didn't recover from surgery.

sorry to hear about your friends who lost their dd
(don't want to be blase about this, sorry if my last post came across like I was - I know some children sadly do not survive - the success rate we were given 5 years ago was 90-95%, which sounds good in theory but in practice, when it's your child, all you can think about is this 5-10%)

I don't think anyone has been even slightly blase. It's a serious topic and one close to all of our hearts. You'll know the risks and be blinded with facts and figures in your meeting. You'll be scared beyond belief by it all I'm sure. I'm here to tell you the positive. I'm here to represent the 'how good it can be' side but not for a minute taking away how difficult this must be for you right now. You're very, very much in my thoughts Dreaming.

Geekgrrl - you have put the emotional focus on risk much better than I did.

I wonder whether you know my friends who lost their dd? They were very active in supporting the Down's Heart Group as their memorial to her. They used to host families from outside London or overseas who were bringing children to GOSH. Dreaming - this is a diversion to your thread EXCEPT that it is an example of the committed and practical support that really is out there.

Blu some babies died due to ignorance or discrimination by medical professionals who were reluctant to give life saving surgery to children with ds - huge outcry and investigation into it at the time. Very naughty they were.

geekgrrl with dd1 - Royal Brompton surgeons gave us a 95% and upwards success rate. talking with dd1's aussie cardiologist this is the most common type of heart defect found in children with ds and the easiest in someways to repair.

Dreaming - hope you're ok after all this.
Looking forward to hearing from you.

dreaming, I have had amnio with both pregnancies and I know at least a bit about the waiting and wondering period. I can remember well with both of them when we first told the clinic we wanted amnio we were clear that we would terminate if any serious defects were found. However, as the time drew closer and the baby got bigger I found myself questioning our decision. Since our results came back normal both times, I will never know what we would have done otherwise. I just know that it must be a heartwrenching time for you and I wish you all the best in coming to a decision.

I have never told anyone this and wasn't going to post but feel I have to tell you my experience.

almost 2 years ago, had barts test then amnio that showed I was carrying a downs baby, a little girl. We were given 24 hours to decide what to do and a leaflet telling us the problems that downs children can suffer. You can imagine how my husband and I felt. At that time all we knew was that our baby could have a serious heart defect, behaviour problems, die well before us and basically not have a good quality of life.

Based on that we decided to terminate and I will regret it everyday for the rest of my life. The doctors offered a later scan at 22 weeks to see if she had any physcial abnormalities (heart defect etc) but said if she did and we decided to go ahead with the term they would have to 'kill her'by injecting me (yes, they used those words) before they could start the process so we thought it best to not wait.

since then I have researched into DS, found out so much information that I did not know and was not given at that time.

I have been ttc since then without any luck and feel it is my punishment for the choice I made.

My dh and I don't talk about her as its too upsetting, we think about her always though and what might have been. I can't change the past but if I had known then what I know now my daughter would be with me today...she would have been 2 last May.

Dreaming. I am so glad you are researching into this and finding out all you can. Whatever you decide at least you are prepared. Follow your heart.

Well, I cried while writing this but I hope it helps. Everyones experiences and choices are different and I just wanted you to hear the other side of the coin. Everyone out there with downs children, you sound so happy and fulfilled and I am so happy for you. I have a 6 year old ds who keeps me sane and is my pride and joy. In my heart I have two children

dizzy I'm so sorry
don't know what to say

stories like yours show why it is so important that doctors and hospitals make sure they give up-to-date information - sadly this is one area where so much work is still needed.

Dizzy, well done for sharing that, it must have been very painful, and was very brave of you, I'm so glad you have spoken out.
Your experience, and others that have had similar experiences is what made me vow to speak out and tell my story, a positive one.

24 hours to decide and told things like 'they' can suffer

I'm so so sorry this happened to you.
Sitting at work in tears

Oh my goodness.

First of all Dreaming I am so sorry you are faced with such difficult decisions. I agree that MN is a wonderful place to learn more, share experiences and help you come to the decision which is right for you, whatever that decision is.

Thomcat - I have read your posts about Lottie before and have never failed to be moved by what you say. She sounds a wonderful little girl and an asset to your family.

Eidsvold and Geekgrrl - I loved the pictures and reading about your stories, thank you so much.

Dizzy - I am so very sorry for what you went through. It must have taken huge courage to make that decision and thank you for having the strength to tell us about it.

Take care all XXXX

Back from the hospital, went ok. The consulatant wasn't the best communicator but he tried, and was very open about the facts and didn't try to lead us in anyway - and i didn't feel he was pessimistic about downs. We didn't learn too much new info but our heads have been spinning a bit since. I'm doing dinner for my ds now, but will be back on later with a few questions for thombat, evidsold, geekgirl etc if thats ok.

dreaming

dreaming, glad to hear it went ok.
the DSA do a booklet on continuing a pregnancy with a positive diagnosis here , it was published this year so is nicely up-to-date.

Feel free to ask away when you're ready.

So, so pleased you checked in and glad it wasn't an awful appointment.
I'm here all night so will keep checking back in tonight and all week.

thanks to all who have posted. All the positive portrayals of having a child with downs are heartening and help us past the shock to trying to picture our life. Thanks also to Blu and others for highlighting the risks, this is not an easy choice on so many levels, and each new level presents the pain of confronting it and than the acceptance that comes with understanding. I'm exhasuted.

what would really help is to have a picture of some of the day to day- particularly eidsvold if you could - in the early years. It seems there are physio's, speech therapists, help with feeding, signing etc. etc. I'm sure once you are in there and this is your life it all just slots into place, but to hear some first hand accounts would be great. What were the hospital stays like for you and your partner? Did your dd's pick up lots of infections in their first year? Does that ease as they get older or are they still suscptible to infections, now they are in school/ kindergarten?

And a random question. have you travelled much with your dd's? Sounds strange I'm sure but this is pertinant to our situation. I'm just wandering if health concerns or other things that i may not understand have limited where or how or when you travel.

I know this is alot to ask, please don't feel the need to answer everything. Just the odd line would help. I'm planning on calling the Downs association again tomorrow - we weren't back in time to catch them today.

thanks - and sorry for going on and on

xx

DOF....(((((((((Cyberhugs)))))))))))))) to you! I can only imagine how difficult your decision must be...and no one but you and your partner, your lil family wil have the answer to this....in the end a child with difficulties of any kind will influence all your lifes....you have to thin about what would be best for all off you, including this unborn Baby....think about how you cope now, etc...how your realationship is now, etc....althought, I also am a true believer that you will find the strenght somewhere, for what ever you have to cope with!

Dreaming - no advice to add, just virtual support.
TB/TC - your original post about Lottie was very very beautiful
Dizzy - Big hugs........

Hiya

Poor you, yes you really must be exhausted

And you should know by now not to apologise for 'going on' , which you're not doing, you, your asking the questions you need to ask.

I can't help with heart problems but even so I can talk about some stuff with you....

Yes there are physio's, speech therapists, and occupational therapists.
I usually combined the appts so I saw 2 or all 3 therapists in the same appointment. They were once a week and I saw them as my version of mother and toddler groups. I felt very kucky to have all these people helping me reach goals with lottie. We also had portage which is basically having a special needs trained person come to visit you at home once a week and give you ideas on how to get your son or daughter rolling over, climbing stairs, anything and everything. Mine bvecame a freinda dn we sat round chatting drinking tea, she helped me fill in forms and suggested things to help get lottie mobile. She lent me toys etc etc.

With regard to picking up infections. Not for us no. She gets a cold like the next child, but she's healthy and happy. She is long sighted so supposed to wear glasses but doesn't really tbh. hearing fine, everything is fine. She doesn't walk, yet, but we are getting there and she gets around in her own way and has fun doing it.

Travelling - I can tell you that we have never stopped doing anything we would do anyway or with any other child. We've been camping, we've staye din villas, we've been to music festivals, away fro weekends, swimming, horse riding, anything and everything.

Finally - keep asking questions. Not even think 'oh they might seem silly'. They are not and I massively admire you.

If you like, you are welcome to email me or to call me. I'd happily chat to you. just an offer, either way, I'm here.

TC x

Dizzy, I have just read your thread and felt I had to post a message to you. My Husband and I have previously discussed what we would do in the situation of being pregnant with a downs child, as he is 45 and I am 38. We have said we would probably terminate. Although it is much easier to decide "theoretically". When you already have a child you have to consider the effect it would have on their lives as well. It would always be a decision that you would never really come to terms with. I honestly believe that you would benefit from counselling. I had counselling after failed IVF, it was during that I fell pregnant with my daughter naturally after 7 years. Have you considered asking your GP for a referral to a counsellor? You have been through such a lot. My heart goes out to you