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

[Iluvmommyhood]

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.

 

[citymouse]

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

 

[bananaz]

What difficult news, and how terrible that your husband is not being supportive The only advice I can give is to do what's right for you and make a decision you can live with. I work in special education research and I can assure you that there is a lot of support out there for parents of children with Down Syndrome.

 

[megrenade]

I'm so sorry

I don't know what I would do, personally.. because I'm only 19 and I don't know how I'd deal with that, and I wouldn't be able to afford special care.. and I don't know how much patience I would have, especially since this is my first pregnancy.. I can only imagine how hard this is on you.. just research and explore all your options.

It doesn't help that you have an insensitive husband either.. I wish I could help you.

 

[xAmiixLouisex]

I'm sorry about your news. I don't have much advice other than, do what you feel is right. If you think you can still love and care for your baby the exact same as you did before, then hold your head high and do what you have to do. But, if deep in your heart you don't think you can handle it, then as I said.. do what you feel is right. I hope you find the support you're looking for. xx

 

[mtnprotracy]

I wish I had magic words.....you'll make the right decision, just trust yourself.

I'm the mom of a special needs 12 year old. He is autistic and non-verbal. Having a special needs child does change some relationships. I am very fortunate to have an amazing husband and a tremendous support system. Even though it's difficult, special needs children bring much joy to many families. I just can't imagine our lives without Zeke.

Thinking of you and sending thoughts and prayers.

Tracy

 

[YoshiPikachu]

I knOw people that have down syndrome and they are really nice, and lot of them have jobs so don't think that can't happen.

 

[Jaylynne]

I grew up next to a down syndrome boy (knew him over 20 years) and he was the nicest, sweetest guy ever. He could totally make you smile even if your day was shitty. They have unconditional love and he was always happy and smiling. Downs is a challenge, but no way the end of the world. I personally am against terminations and I already love my baby and would do anything for him, but I know my choices aren't everyone's. Children are a gift whether disabled mentally or physically. Don't base your choice on something an unsupportive husband wants. You have to live with your decision and potential guilt everyday.

 

[Kristin52]

No advice, but wanted to send hugs

 

[Lucy_girl]

I'm sorry and wish I had great advice.. Follow your heart.. Xx

 

[sandilion]

I agree that you should just do what you feel is the right thing to do..

I am so sorry you're going through this

 

[littlemamana]

I used to work with many down's syndrome toddlers in a day care I worked at and they are such beautiful souls. The were always willing to share their toys and gave the sweetest hugs. I also worked with the special ed department when I was in high school and the kids with down's syndrome there were also extremely, extremely nice. Please consider all of your options before termination especially since you are already in love with your baby. I wouldn't want you to make any decision that would haunt you later. Whatever you choose, make sure it's the right choice. Look into all of the resources available to you and make an educated decision on your abilities to take care of this child.

 

[youngmommy2]

Wow hun.. im so sorry your faced with this incredible life changing decision.. i cant imagine.. however, id be more concerned with the heart defect then the downs. While yes, down syndrome can be difficult and challenging for everyone involved, they are really such beautiful and pure people. but if i was in your position, to be honest, id likely terminate. not for myself or to save my family/husband from any struggle, but to save my child from a very difficult and challenging life and possibly life threatening with the heart defect. its all up to you hun, all i can do is give you a big hug, and tell you that were all here for you no matter what your decision is.

 

[Whitbit22]

I grew up next to a down syndrome boy (knew him over 20 years) and he was the nicest, sweetest guy ever. He could totally make you smile even if your day was shitty. They have unconditional love and he was always happy and smiling. Downs is a challenge, but no way the end of the world. I personally am against terminations and I already love my baby and would do anything for him, but I know my choices aren't everyone's. Children are a gift whether disabled mentally or physically. Don't base your choice on something an unsupportive husband wants. You have to live with your decision and potential guilt everyday.

I think Jaylynne said it perfectly. I went to school with kids that had Downs, and my niece and nephew are mildly (slow) They are such loving and giving people, and like anyone else deserve love. I am sorry your husband is not supportive, I really hope he comes around. About the heart defect- I'd be more worried about it as well. They can do some amazing things in utero these days! I'd just keep talking to a doctor and maybe it is something they can fix through surgery before birth, and they may even give you a referral for some counseling.

Having went through several years of counseling during a rough patch of life, I can say it's extremely beneficial and perhaps you should consider it no matter which decision you make.

 

[luckybreak]

Congratulations!!! you were selected to be a mom to such a special child!! Just like you I was fortunate enough to received such a gift! Mine unlike yours hid her secret from all of us so when she arrived she was quite a surprised!! Since the day she was born she blessed all of our lives! Will never change it for the world.

How will your life change? Well first and foremost they are babies just like the rest of them, they will need your love, support and to be kept safe, like yours mine had a heart defect, I am not sure what type of defect yours has but mine had a little hole in her heart that should have closed after birth but did not...so after 5 months she went thru surgery ( not open heart) technology nowadays is so great that they plugged her little hole with only 2 small incisions, then of course you will be going to more doctor's appoints on her/his first year to make sure everything is working as it should after a year or so mine only went to her regular shots and doctor's appoint and she is now 8 years old and just like any normal child just goes for her yearly check ups.

She does needs speech therapy and supervision because she is still small 8 years old but just like any child you would look after.

I remember when my Lily was born, for some reason strangers that came to visit other babies were always drawn to her and they had no idea why, they would come up to her little bassinet in the hospital and say things like what a special child ( they had no clue she had downs) it was just a special spirit for sure.

You will worry, you will cry, you will laugh, you will learn to see your child just like any other except she does her things a little slower than others, it is not easy but I swear to you is sooo worth it!

non Supportive Husband : I am sorry for this and I am even sorry for his suggestion, I don't know your hubby but I wonder if once baby is here he will fall in love with it? or would he leave you? I wish you the first but again I don't know him.

Should you terminate : What a decision you have ahead of you, I of course can't tell you what to do, all I can tell you is my experience...but I can tell you, you have choices you could carry the pregnancy out and give up the child for adoption here in America we have a year long waiting list for parents hoping to adopt a child with down syndrome so you could bless somebody else dreams of having a special angel in their family.

90% of women given a positive amniotic test for downs choose to terminate, that breaks my heart but of course it is their own choice.

There are tons of support out there, I can talk to you about how wonderful it is to have such a child but at the end of the day the decision is yours my friend and it is such a heavy one when you feel alone and unsupported by your OH.

I am here for you if you have any questions, my best wishes to you and your precious cargo!


Here is one of my favorite photos of my little lily

https://imgs.inkfrog.com/pix/toysofmylife/n1402458970_30093689_6757.jpg

 

[ashiozz]

I have an ex coworker that still visits our office, she gave birth to a little girl who also has downs but had a hole in her heart as well. I am not sure if this defect is the same as your baby's, but I do know that she had surgery at six mos old and while her recovery was long and difficult, she pulled through and did fine .. You should do what's right for you, this is going to be a lifelong commitment and some days will be harder than others, and no one can see the future and how severe the issues will be. I'd say do more research and make the best decision you can for you AND the baby.

 

[Jtiki]

Sending positive thoughts your way, no matter what you decide. For me, the extent of the heart defect would be a bigger issue than just DS in deciding about termination.

 

[maggsy11]

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.

Can i ask what tests where done to confirnm this, ( afp bloods, nuchal fold measurement)? How did they come to this conclusion?? I thought that with high afp results they can the perform an amniocentesis to diagnose definitavely whether the baby has this syndrome? xxxx

 

[Nadialew]

i am sorry you have to face this... i couldn't offer anything, but here is some hugs for you.... *HUGS*

 

[Sew_Sweet]

I can't imagine all of the emotions you must have right now. I feel like everyone else here has already said about everything there is to say. I whole heartedly echo everything luckybreak said in her post above. I've known people adults an children both with down syndrome. They are warm and caring and in most cases - very highly functioning as well. I think the heart condition would be more of a concern for me. Heart conditions are common in children with down syndrome so that isn't surprising - the severity varies. Perhaps you could learn about what type of heart condition the baby has. That might help ease your mind a bit.

I am so sorry your husband is being unsupportive right now. This is probably as big of a shock to him as it is to you - men deal with things a bit differently. Nobody expects to have a "special" child and everyones initial reactions are different. I think that if you feel very strongly one way or another about it - you should share that with him. Talk it out. If you really want to keep the baby - I think you should regardless. I think it'd be very hard to deal with guilt if you were not in 100% agreement with termination. But I also want to echo lucky again about adoption as a possible option as well. Many many couples would love to have a child - even and sometimes especially a child with down syndome. They are such loving special kids - truly truly. My heart goes out to you - no matter what happens I imagine this is very nerve wracking. I wish you and your LO all the best! hugs!!