Just confirmed: Down Syndrome and Heart Defect. Scared and confused

[sandilion]

luckybreak your post made tears stream down my cheeks! Such a good post. Your Lily is absolutely adorable.

 

[BrandysBabies]

If you have time, please read this entire thread. It is super long, but so worth the read. Everyone pushed Gigglebox to terminate too and were positive that her baby had chromo abnormalities and a heart defect as well. I pray that you make a decision that is right for you and your baby.

https://www.babyandbump.com/pregnan...807-cystic-hygroma-not-good-scan-updated.html

 

[luckybreak]

luckybreak your post made tears stream down my cheeks! Such a good post. Your Lily is absolutely adorable.

Thank you! I just love my peanut and wish to tell the world how wonderful children with down syndrome are, it is very scary for parents who has never dealt with special needs children so I feel the more we talk about them and our experiences the more we can help the world not to be afraid or overwhelmed with our little ones..they maybe a little different but they are babies just the same

 

[DollPosse]

I don't have any words of wisdom to share. To be honest right now I am quite horrible at even stringing a simple sentence together. I have to have a level 2 scan next week to rule out any issues and I am quite frankly scared as hell, and sometimes I wonder how I just don't explode. In the end though I know I will love any child that I have regardless of their issues.

I know it is not nearly the same but my 5 year old daughter has Autism, and so many people feel sorry for me because I have a daughter who has Autism but you know what? I really feel sorry for them because I have never met a more wonderful person, and your baby will be if not already just as wonderful.

I don't know what will be seen at my scan and I know I don't know what you are going through but I wanted to say that so far my best gift was not one that I expected.

Hugs

 

[jeanniepresto]

i have no advice but do what is best for you and your family.... im sure u will love this baby no matter what the outcome is ..

 

[themaybaby]

It was just confirmed that our baby has down syndrome and a significant heart defect. Totally did not expect this because of my age but this is what it is. I have a 20 month old son and a completely insensitive and non-supportive husband in regards to this pregnancy. I'm scared, disappointed, have no idea what to expect, concerned about how drastically our lives will change, and in love with this baby at the same time. Does anyone have any idea how our lives might change/what to expect? With the downs and heart defect how large is the chance of miscarriage? And I know this is a touchy question here.. has anyone considered termination? I don't know if I could live with myself if I chose this but my husband really wants me to consider this. I'm just at a loss with all of this right now.

My thoughts, my prayers, and heart go out to you. I hope you can make the right decision. I've terminated a pregnancy and I'm not afraid to say that I have. I regretted it tenfold, and just wish I had her or him here with me.. I just wanted to let you know how much it hurts to terminate a pregnancy. It's by far the worse thing I've ever gone through, and to think it was by rchoice. I hope you can get through this, be strong, and do what you think will be best for you all as a whole. Don't forget the little beating heat inside your belly and how she had no choice to be made.. You CAN get through this.

 

[Novbaby08]

 

[erikab922]

I can't imagine the swirl of emotions you're going through right now, and of course it doesn't help when you're not getting the support you need at home. When we first found out we were pregnant my OH and I decided on what kinds of things would cause us to terminate the pregnancy. Then many weeks later we found out we were 1:5 chance for Downs and we had further discussions about termination. I think we both thought it might have been the right thing for us because we have little family support around, but we were so torn that I think the safest decision would have been to continue as usual because I reckon we would have regretted it. But that's completely personal to us and your situation will be totally different. I've always thought of huge problems in terms of that saying 'How do you eat an elephant? One bite at a time'. Break your issues down into little pieces and think about each one individually rather than trying to tackle everything at once, because that's totally overwhelming and will get you nowhere. Think about the bigger individual issues first, perhaps find out what exactly the heart defect is so that you know what treatment options are available. Then put that to one side and go through your issues one by one.

Deep breath, you will do the right thing for you and your family and ultimately that's the most important thing!

 

[kat2504]

I'm so sorry you are faced with such an awful decision.

I hope you have been referred to a counsellor at the hospital. I think this would be the best thing for you and your husband to do. People on here are very supportive but don't know all the facts about your case. Many babies with Down's do exceptionally well, but like all other people, there is a wide range of difference in how much they are affected by Downs. Some live healthy lives and some don't. How much do you know about the heart defect and the impact that will have?

I'm sorry your husband isn't supportive. Perhaps because he is not the one who is pregnant it is harder for him to see it from your point of view, and he is not as bonded yet as you are, as you have the baby inside you and it is a real baby to you already?

Termination for severe abnormalities must be one of the most heartbreaking choices a woman can have to make. For some people it is the right thing for them, and the rest of their family, and the unborn baby. For you, it might not be the right thing to do.

I would urge you and your husband to get professional advice and help with this.

 

[thelioncub]

This is a really tough one.
I don't really have any words of wisdom, but I also didn't want to leave without saying something.

I think if I were in your position I would be asking question after question.
Can the doctors give you more information on the heart defect - Is there an 'official' name? (so you can look up more info yourself) What are the stats in terms of survival? Can surgery be performed - at what age? Are there long-term implications or can it be managed 100%. How sure are they of the results? Has anyone been told the same and given birth to a healthy baby? (I know this happens with Downs more than we probably realise)
From your family's point of view, you also need to ask yourself can you afford to become a full-time carer? Will this affect your other child? (probably not!) Will your husband stick by you? and... I know it's a hard one, can you do it alone? - How supportive are your family?

I know that termination would enter the minds of most of us when faced with this kind of situation, so please don't feel guilty for thinking it. Only you can make this decision of course, so don't let yourself be swayed or put-off by what others say on the matter. We are all different, and whilst it may be the wrong decision for some, it is equally the right decision for others.

x

 

[kristen77]

I am so so sorry, I honestly feel devastated for you, despite having never even had contact with you before. I can't imagine what you must be going through. You desperately need to speak to someone in "real life" - the hospital must have genetic counsellors & I do hope you've been referred? Is it possible your husband is just scared? I think getting him to be more supportive is the key to helping you decide what path to take, it needs to be a decision made by the two of you.

I wish I could help in some way. Thinking of you xxx

 

[wishingonastar]

I can only echo what the others have said

I've had limited contact with children/adults with DS but in my experience they haven't a bad bone in their body...very loving, caring and friendly. One of the difficulties you face is you are still in unknown territory as to whether your baby would be high or low functioning and also of course how serious the heart defect will be and whether it is fixable.

I urge you to read more life experiences (good and bad) from other people who have been in your situation (these are easy to google for) and to read up on the heart defect once you know its name.

With regards termination, one of the reasons two doctors must sign it off (in the uk anyway) is to double check the woman is sure because if she isn't then the longlasting guilt and other negative feelings can be very destructive to the individual. If you already feel love for your unborn but cannot commit to the care involved, perhaps adoption as suggested by the others is a good route...?

Massive hugs to you

 

[Jennifurball]

I am so sorry you are in this position, I hope you make the right decision for yourself, whatever it is. Of course, your husband's opinion matters but it is you carrying the baby. Good luck xxx

 

[Staceiz19]

I'm so sorry to hear this.
I don't really know what to say except just do what feels right for you and your family and i hope your hubby will become supportive.

 

[amy19604]

xx

 

[Clareybeary]

My friend has an 18 month old little girl with DS who was also born with a heart deffect and cleft palatte. She had a very successful heart operation and has had her cleft palate repaired and she is the most delightful little thing! Always smiling and oh so frienldy! Her parents know it'll be tough but as people have said, there are a lot of support systems available to you out there if you decide to go ahead with the pregnancy.

 

[MommaCC]

Just wanted to send you a big x

 

[EveEnRoute]

Just wanted to say my thoughts are with you.
My husband and I discussed the possibility of Downs before I got pregnant, and agreed we wouldn't want to bring a disabled child into the world if we had a choice.
However, now I'm 16 weeks pregnant and waiting for the results of a Quad blood test, it's not so easy. We've briefly discussed it again and decided to do the amnio if we're high risk, but neither of us is sure we could go through with a termination now the baby is real and we've seen it moving on a scan and heard it's heartbeat.
I think my husband would be more for termination than me, but it's such a hard decision even if you're pro choice, especially if you have no experience of meeting anyone with Downs.
I hope you can get support to help you make the right decision for you and your family, and wish you all the best for the future, no matter what you decide.

 

[vikirose]

My baby brother has downs...I was 8 when he was born 27 yrs ago. All I can say is I could never imagine my life without him in it. I don't see him enough as we have other family issues that caused me to get far away but I held on for years just so I could spend time with him. TBH he turned 18 and got quite boring as like most lads he just played on his xbox
I was the eldest of 4 (him being the baby) and my mum suffered with depression so for years I looked after him and even at 8/9 I wanted to know as much as I could so I read whatever books my mum had got out from the library. I don't know who it was by but there was one written by a mother who's dr when telling her her daughter had ds said that she was blessed and every family should have a child with downs and tho I read that when I was 9 it stuck with me.
Loved the blog that citymouse put up and luckybreak...your daughter looks adorable!
About the heart defects, I don't remember too much but Lars did have heart complications that when he was born we were told almost yearly he wouldn't make it passed 1yr..5yrs...10yrs...he's 27 now and healthy as ever!

 

[shinona]

I am so sorry that you are going through this. What is the heart defect? I think someone above had set out all the questions to ask about it. My sister is a paediatric cardiologist and some of the stories she tells me of what they are able to do these days - it's just incredible.

Do make sure you have all the information and have had counselling before you make any decision though.

All the very best.

x