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

[littlecharli]

I just want to say also that you need to follow ur heart darl, and I wish you all the best. One of my best friends brother has Downs and he is the most honest and loving man I have ever met and he works and travels all on his own. He makes us laugh and always has a smile on his face

 

[Angharad87]

I don't have anything worth contribution to be said, but I will say my thoughts and prayers are with you right now.

 

[EveEnRoute]

If you feel like reading it, this is a very well known blog post by a woman whose daughter was born with Down Syndrome (unexpectedly). It's really beautiful and moving. https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Thanks for posting this - just made me cry but in a good way

 

[wishingonastar]

If you feel like reading it, this is a very well known blog post by a woman whose daughter was born with Down Syndrome (unexpectedly). It's really beautiful and moving. https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

Thanks for posting this - just made me cry but in a good way

Wow me too! Tears were streaming down my face reading that...it felt like an honour to share the birth of that special beautiful little girl

 

[gemalems]

I cant imagine being in your situation. All i can say is do what you feel is best for you and your family, dont let anyone influence your choice as its your life.

 

[marmar]

Many hugs and prayers of strength and joy come your way. The little one is beautiful and we all support you here, now and always!

 

[SamanthaYC]

Many many hugs.

 

[tiffffx]

I'm so sorry.

If you feel like reading it, this is a very well known blog post by a woman whose daughter was born with Down Syndrome (unexpectedly). It's really beautiful and moving. https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

that story is heart moving

 

[ami1985]

Having a downs child can be challenging but they are one of the happiest and loving baby/toddler/chilren you could every have

 

[Jade_Kitten]

 

[Iluvmommyhood]

They used the NT measurement to give a 1 in 4 odds of downs. Then during a 16 week ultrasound they found the heart defect, Atrialventricular Septum something. I followed through with the amniocentesis that day and that is how I got the confirmation of downs.

 

[Iluvmommyhood]

To ALL who have replied to my post:

I want to thank you all for taking the time to read and respond to my fears and questions. All of your responses are so genuine and touching, and I never expected to receive such responses and support. Truly, THANK YOU.

Many of you asked about the heart defect, it is Atrial Ventricular Septum something. Basically the doctor explained seeing no divider between the two atria chambers, and a piece of the septum is missing between the ventricles. He said he saw basically one valve between the upper and lower chambers, when there would normally be two. He said this is likely correctable with surgey. My husband and I are scheduled to meet with a pediatric cardiologist next friday, though it's probably too early for her to do a detailed scan, she is willing to sit with us, explain what she sees and possible surgery/recovery expectations. At this point, for some reason I'm not as afraid of the heart defect as I am the downs. We are also scheduled to meet with a developmental disabilities pediatrician that same day, who will explain to us his experience of working with children with down syndrome (and their families) across the spectrum. The ultrasound doctor we have had for this I cannot say enough good about.

And just to clarify because there were some questions, an amniocentesis is what confirmed the presence of down syndrome.

Again, I want to thank all of you for taking the time to respond. Your thoughts and experiences are extremely welcomed and appreciated.

 

[April2012]

I am sorry to hear about the shocking news you received about your little one. from your last post, it sounds like you two have some good plans in place.

my aunt has downs. she lives independently, works, has friends and more hobbies than I do! she lives a more productive life than most people. she has always remained particularly close to her parents. when my grandfather passed away, she became a very significant source of strength and companionship for my grandmother--whereas the other kids in the family had moved away.

I can imagine it is nice to hear these stories, but doesn't take away from the concern and fear you have. i know for me, the decision would be exceptionally hard. and unless i was in your situation, i couldn't tell you what i would do.

 

[Borboleta]

I am so sorry about what you are going thru. I worked with downs in a special school in brazil and they were the sweetest kids. I have learned a lot from them.

But at the same time let me tell you about this lady that I know that did the blood test to see her chances of having a baby with abnormalities and it came back very low. She was 27 and this was her first baby. They just found out the baby had downs when they delivered the baby. Her husband and her were in shock. And after deep consideration they decided to give their little downs girl for adoptition. Today her daughter is 15 years old and she was adopted by a family that really loves her. The adopted family actually wanted to adopt a baby with special needs and they found her. I guess it was meant to be. My friend that gave her baby for adoption still tells me this day that it was the harders thing she ever had to do but it makes her feel better to know that she is with a good family and they love her as much as she would.

God bless you with your decision. Believe that He will put it on your heart what is best for you, the baby and your family.

 

[bonidee]

personally, if you can live with adoption better than a termination then that's what I would do. my decisions aren't yours, but your husband is probably having just as hard of a time with it as you are.

men think really differently than women and i think we forget that sometimes. we like to talk through our emotions and confront them while men like to be alone and reflect. just give him time.

the questions you need to ask yourself are whether or not you can give the child the loving and attentive environment that it will need or if you would rather give it to someone who can.

both decisions are equally heavy. but you have all of us for support when you need it.

 

[starrbabes]

I'm so sorry to hear this. Just listen to your heart, it will know what to do.

 

[yumosh]

Not much to add but hugs and lots of strength.

These stories have moved me beyond words. I fear DS too but only because I am ignorant of the facts. I feel more informed now and less anxious. I would never consider a termination now bcause im jst too in love with him/her!

Please make an informed, medical decision and not one based on the needs of a man, husband or not. I just believe women were given this responsibility for a reason.

I hope the answer you're searching for arrives soon. X

 

[libbylou]

I am so sorry you're going through this, it truly is any expectant parent's worst nightmare to find out something this devastating about that precious little baby growing inside of us

My only advise is to make 100% sure on your decision, whatever it is. Do your research, talk to people, see a counsellor. Make the decision based on your heart and the information you've gotten. Do not let your husband push you into a decision that you can't live with

Having a baby with DS or anything other type of disability will be a tough road for sure, but not an impossible one

 

[mommylam]

I sort of popped in from the first trimester but I have belonged to a forum for blighted ovum loss for years and there is a lady there who went through a lot of the same emotions and thoughts and feeling when her daughter was diagnosed with Down Syndrome. I'm sure she would be happy to communicate with you if you are interested I could speak to her and get an email address or something for you. She's a wonderful person and I just know you'd feel better talking to her. Just send me a message or reply here if you are interested. Her daughter also has/had a heart problem of some kind but I'm not positive what.

 

[Caezzybe]

My 16 month old has DS, he is the sweetest most adorable boy you could ever wish to meet. We do all sorts of activities with him, including early intervention from DownsEd (it's worth you googling them, their approach is very good). Logan has exceeded all our expectations and is doing all sorts of things we never imagined. Although he is physically delayed, he can sit alone and commando crawl and can stand for short periods with support. He will walk and run one day, but will just get here in his own time. He can already match pictures that are the same and pick the correct phonic card for a sound from a choice of two. He can feed a doll with a spoon and a cup and has also tried to feed Daddy with a spoon. He loves to roll a ball across the floor and is good at turn taking. He shows empathy for others and loves interactive toys. He can figure out how a new toy works in minutes, faster than his Grandma! His problem solving skills are fantastic and his speech is developing well. He has been able to double babble since about 10 months old and is doing "babble talking" now. We focus on his positives and try to strengthen any areas that are a challenge for him. His DS was a surprise at birth and he had a minor heart problem (ASD) that had closed by 50% at his last echocardiogram and is expected to heal on its own. He was lucky in that respect, most of his friends from the local DS support group had heart surgery but all of them have recovered well.

If I could give you one piece of advice, it would be to go on google and find your nearest Down Syndrome support group. Talking to other parents in the same situation has helped me so much and it was such a joy to see the children and get some idea of what I could expect in the years to come. Nobody will judge you, we parents see a lot of people who are newly diagnosed and still trying to make a decision or find their feet.

Logan is the little boy in my avatar picture by the way big hugs to you and good luck in the coming months for what is ahead of you, whatever you decide to do xxx