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

[NuKe]

i dont have any personal experience sweetheart, but i can imagine how you are feeling.. try checking out the https://www.babyandbump.com/special-needs/ and even perhaps the https://www.babyandbump.com/ethical-prenatal-losses/ sections. there will be people who've seen both sides there are hopefully you get some good advice

 

[feeble]

Downs syndrome can be incredibly debilitating, or can be the total opposite, many downs children dont live very long (though some go on to live to 40 or beyond, though it is rare past that)

I think you need to think about a couple of things here

1. can YOU handle being the mama of a baby who may need you to bathe, feed and care for it much as you would a young child for all of its life (maybe 30 years)

2. How much do you think this will affect your other child? Can you cope with that?

3. If your husband is being unsupportive, then its probably best to think about how you will deal with both children, one of which may need heart surgery and other support well into its adult life, without him

I am sorry to be blunt here, but its important to be sure, i realise you say that you would find it hard to live with, but your existing child and any future children would have to live with it too x

there is a chance that you may get a child with downs who is in the able range, then this stuff wouldnt matter so much and having spent time with downs children and adults, i would say they enrich life so so much, they look at the world as innocent little beings and it is really beautiful

but a heavily downs child... can be awfully difficult and they can suffer from extreme heart defect and unfortuntly many dont last long x

bless you, what an awful decision to have to make, but i would not write off any possibility, termination is a horrid thing to have to consider but actually, if you have a heavily downs child who will suffer through life... well it is worth considering x

ask for some support and help making your decision, there will be trained councillors who can help you with this

so sorry xxx

feeb

 

[Mommy2Dallas]

There is always hope my dear my cousin was born with DS and she is a happy 13 year old and shes beautiful and so smart. My aunt went through the same thing and she said the best thing she ever did was have her daughter because she taught her how to love like the lord says. Praying for you and family.

 

[Jaylynne]

I'm a firm believer that we aren't given situations that we truly can't handle. Sure it's daunting and I would be very worried in your situation. But it's amazing what strength we find that we didn't know we had unless tested.

 

[YoshiPikachu]

I'm a firm believer that we aren't given situations that we truly can't handle. Sure it's daunting and I would be very worried in your situation. But it's amazing what strength we find that we didn't know we had unless tested.

That is so true!

 

[babymama86]

When we had our 12 wk scan and blood test i started getting really scared about downes etc, we had to wait a week for the results and its all i could think of, i thought i was going to go mad!
Then my hubby and i went to one of his work functions where everybody brought their children, i was looking around and this little downes syndrom boy caught my attention (he was about 2 at most), i could not take my eyes off him because he was so beautiful! I nearly cried when his dad picked him up and this little boy just stared at him and stroked his hair! i told my hubby and he couldnt take his eyes off him either, we both walked out of the function not worrying about downes anymore because this sweet little boy had put everything into perspective!

He has just undergone heart surgery and had some bowel removed but is the happiest little boy and thats how downes symdrome children are, they are amazing people who love life so much!

It is completely up to u what u do as its only a decision u can make. I hope what i have posted will help u somehow, all i can say is make the decision based on what u can live with! If u can support a downes child and you are already too in love with your baby than maybey consider it.

 

[Arisa]

Im so sorry you are in this predicament
all I can suggest is that you do what is best for you in the long term, for your son and really sit down and talk with your husband, its unfair for him to put all of this on you and you need support and their are plenty of groups that offer special needs support as well as support for mothers contemplating ending a pregnancy too
noone has any right to judge you for the choice you make in the end as its your body

 

[mommylam]

Downs syndrome can be incredibly debilitating, or can be the total opposite, many downs children dont live very long (though some go on to live to 40 or beyond, though it is rare past that)

I think you need to think about a couple of things here

1. can YOU handle being the mama of a baby who may need you to bathe, feed and care for it much as you would a young child for all of its life (maybe 30 years)

2. How much do you think this will affect your other child? Can you cope with that?

3. If your husband is being unsupportive, then its probably best to think about how you will deal with both children, one of which may need heart surgery and other support well into its adult life, without him

I am sorry to be blunt here, but its important to be sure, i realise you say that you would find it hard to live with, but your existing child and any future children would have to live with it too x

there is a chance that you may get a child with downs who is in the able range, then this stuff wouldnt matter so much and having spent time with downs children and adults, i would say they enrich life so so much, they look at the world as innocent little beings and it is really beautiful

but a heavily downs child... can be awfully difficult and they can suffer from extreme heart defect and unfortuntly many dont last long x

bless you, what an awful decision to have to make, but i would not write off any possibility, termination is a horrid thing to have to consider but actually, if you have a heavily downs child who will suffer through life... well it is worth considering x

ask for some support and help making your decision, there will be trained councillors who can help you with this

so sorry xxx

feeb

I personally feel that your comment about terminating a "heavily downs chilf" is a bit off base since there is NO WAY to know the level that the baby will suffer from until it is BORN!!!! Anyone in this situation has a hard decision to make but I disagree that this child should be made to sound like a burden. I happen to know a few parents of children with down syndrome and NONE of them are unhappy with their decision to raise their child and NONE of their children feel "burdened" as you say because their sibling has down syndrome. Many of these children bring their families a lot of joy and love and I just feel like your post doesn't discuss enough of the positives!!!

 

[feeble]

i'm sorry you feel that way, having worked with severely and not so severely downs children, i stand by my comments and believe that they are accurate.

Raising a slightly downs child can be challenging but raising a heavily downs child definitely takes it to another level. All aspects need to be considered and the OP should feel empowered in whatever she chooses to do.

its a tough choice to make but its best to know all elements of it rather than just the positives or just the negatives.

I know that the full support of my husband would be a huge factor to me, as would my wish to have other children and the sensitivities of the children i already have.

it is not easy, it will not be easy either way, it is a decision you live with either way...

but all choices should be considered in order to make the right one, i dont think my post is negative, i think it is realistic, if you are prepared to make the choice knowing what that choice is, then a downs child in your life can be totally enriching, but its important to understand the levels of downs syndrome, its not just a cut and dry thing it has different aspects.

 

[feeble]

p.s - i never used the expression 'burden' and i have checked through my post again, that is not 'my words' at all!

 

[mommylam]

i'm sorry you feel that way, having worked with severely and not so severely downs children, i stand by my comments and believe that they are accurate.

Raising a slightly downs child can be challenging but raising a heavily downs child definitely takes it to another level. All aspects need to be considered and the OP should feel empowered in whatever she chooses to do.

its a tough choice to make but its best to know all elements of it rather than just the positives or just the negatives.

I know that the full support of my husband would be a huge factor to me, as would my wish to have other children and the sensitivities of the children i already have.

it is not easy, it will not be easy either way, it is a decision you live with either way...

but all choices should be considered in order to make the right one, i dont think my post is negative, i think it is realistic, if you are prepared to make the choice knowing what that choice is, then a downs child in your life can be totally enriching, but its important to understand the levels of downs syndrome, its not just a cut and dry thing it has different aspects.

I understand knowing the negatives and the positives but I don't believe you can find out the level of disability until AFTER the child is born. As for the support of a husband, I have a friend whose husband worked with children that had down syndrome for years and when their daughter was diagnosed with it - he was very much against continuing the pregnancy but supported her since she wanted to. He has never regretted that his daughter was born and has been very supportive since her birth. I'm not saying that what you were saying is wrong....I just think you paint a pretty bleak picture when it could go either way as MOST children with down syndrome are NOT heavily disabled but mild to moderate.

 

[mommylam]

p.s - i never used the expression 'burden' and i have checked through my post again, that is not 'my words' at all!

You did not....I'm not starting a fight here...that's just the feeling I got from your point about how it will affect your other children and how you would be able to cope with that. My fault for placing words that were not intended......sorry!

 

[feeble]

Well personally, i would rather prepare for the worst and get the best, than make a decision based upon a child being mild downs and then finding out that they can be heavily disabled due to it.

its a very serious choice to make, i believe you have taken my statement as 'bleak' and made up words that i have said such a 'burden' which i didnt say at all, but i have mentioned that if prepared, a downs child can enrich a life. Strange that you are focusing on words i have not said, than words i have said.

A downs child will walk and talk much later, they will take much support in early life and that support may well carry on through into later life, if you plan to have any more children that will be a factor, as will the age of your current children

of course support is a factor! the OP commented that her husband was (at the moment) unsupportive and this would need to be addressed and/or factored in.

I do not see what your friend and her experience has to do with me commenting on something the OP has said?

Anyway, this is irrelevant, i have answered the OP's thread based on what i know about downs and what i think should be considered, i havent done that because i am a mean nasty person or anything of the sort, i have done it because i think it is what she wanted when she opened this thread

had she wanted a rose-tinted view of what downs was, perhaps she would have put this in the title? Regardless, i dont want to argue with a third party about, especially when they have made up phrases that i have not used.

 

[mommylam]

Well personally, i would rather prepare for the worst and get the best, than make a decision based upon a child being mild downs and then finding out that they can be heavily disabled due to it.

its a very serious choice to make, i believe you have taken my statement as 'bleak' and made up words that i have said such a 'burden' which i didnt say at all, but i have mentioned that if prepared, a downs child can enrich a life. Strange that you are focusing on words i have not said, than words i have said.

A downs child will walk and talk much later, they will take much support in early life and that support may well carry on through into later life, if you plan to have any more children that will be a factor, as will the age of your current children

of course support is a factor! the OP commented that her husband was (at the moment) unsupportive and this would need to be addressed and/or factored in.

I do not see what your friend and her experience has to do with me commenting on something the OP has said?

Anyway, this is irrelevant, i have answered the OP's thread based on what i know about downs and what i think should be considered, i havent done that because i am a mean nasty person or anything of the sort, i have done it because i think it is what she wanted when she opened this thread

had she wanted a rose-tinted view of what downs was, perhaps she would have put this in the title? Regardless, i dont want to argue with a third party about, especially when they have made up phrases that i have not used.

If you notice the post I made before your last one then you would see that I said I was sorry for using a word that you had not used. I was not and am not trying to start a fight here and I'm not trying to make down syndrome seem like only a positive thing when it is very serious.

My friend and her experience were only used to show that sometimes a husband that is not initially supportive can end up feeling differently later. I also don't feel that you're a mean and nasty person or that you were offering anything but advice based on your experience.....and I was commenting to that based on mine. Sorry if you feel that I have attacked you.

 

[luckybreak]

Downs syndrome can be incredibly debilitating, or can be the total opposite, many downs children dont live very long (though some go on to live to 40 or beyond, though it is rare past that)

I think you need to think about a couple of things here

1. can YOU handle being the mama of a baby who may need you to bathe, feed and care for it much as you would a young child for all of its life (maybe 30 years)

2. How much do you think this will affect your other child? Can you cope with that?

3. If your husband is being unsupportive, then its probably best to think about how you will deal with both children, one of which may need heart surgery and other support well into its adult life, without him

I am sorry to be blunt here, but its important to be sure, i realise you say that you would find it hard to live with, but your existing child and any future children would have to live with it too x

there is a chance that you may get a child with downs who is in the able range, then this stuff wouldnt matter so much and having spent time with downs children and adults, i would say they enrich life so so much, they look at the world as innocent little beings and it is really beautiful

but a heavily downs child... can be awfully difficult and they can suffer from extreme heart defect and unfortuntly many dont last long x

bless you, what an awful decision to have to make, but i would not write off any possibility, termination is a horrid thing to have to consider but actually, if you have a heavily downs child who will suffer through life... well it is worth considering x

ask for some support and help making your decision, there will be trained councillors who can help you with this

so sorry xxx

feeb

You speak as somebody who does not have a child with down syndrome...first off most people do not know they are going to have a child with Downs because the screening tests come back "normal" range and they find out they have one at birth...like me! So what do u do next? you treat them like a baby which is what they are! Not a downs baby but a baby born with downs.

Second you don't know what level of disability a child will have until they grow and the whole 40 year old thing is totally crazy too!

Third a child with downs is like any other child...people have children born with other disabilities unknown to them at birth but found later on in life what do they do? they find a solution to help their child...there is no such thing as a "debilitating" son or daughter, there are challenges like those parents with children who develop cancer as toddlers do you think that would be hard on any parent or family and therefore for the sake of the other children they should be handed down somewhere else because it is too "debilitating" not only emotionally, physically but very well financially?

Nobody will ever have a perfect child..there is no such thing, there maybe children born with less challenges than others but there is no perfect child..perfection is on the eye of the beholder. My peanut is 8 years old with downs and I see her as perfect! because she is mine and I love her just the way she is after her little heart hole was plugged she visits her specialists every year for her well child check like any other child...she maybe delayed in other things but so are others without downs...I understand you want to give the OP a "reality check" but please do it with knowledge not with assumptions.

Thank you

 

[feeble]

i am sorry, i am not making assumptions, this is from the NHS website

The outlook for Down’s syndrome can vary widely, depending on whether a child with the condition also develops any other serious health conditions.
Children with Down’s syndrome are most vulnerable during the first year of their life. About 15% of children with Down’s syndrome will die during the first year, usually from a complication that arises from congenital heart disease.
After the first year of life, the outlook for children with Down’s syndrome improves dramatically. Due to advances in treatment, the average life expectancy for a person with Down’s syndrome is around 50, and this may well improve in the future.
Every child’s personality is different, and it is important never to stereotype a person with Down’s syndrome. However, in general terms, people with Down’s syndrome tend to have warm, gentle and cheerful personalities, despite the day-to-day problems they have to face.

When i worked with Downs which was around 7/8 years ago, i was told in my training that the average lifespan was 40/45, i am glad this has improved slightly but it is not made up or an assumption

I totally agree that a child with downs can enrich a life, but it is really up to the family if they can deal with the negative aspects to get to the positive.

I just think all aspects (and options) need to be considered thats all.

Anyone who has been around a child with downs will know how beautiful they are, how special they are but we are not talking here about a woman who has discovered this about a new baby, but is asking for advice about her choices right now.

 

[Kyliem87]

Personally I think this is being blown out of proportions. ANY child will come with positive and negatives, no matter what the situation. I do believe that for the OP's benefit that they need to look at all sides of what they DO know to make a decision for them and their family...however I can promise, accepting a child with ANY disability - not just downs syndrome will NOT effect any future children. Future children will not know any difference and life will be as it is. Downs syndrome is one of those conditions which we do not fully understand...heck although the medical profession is fab there is so much they don't know!

My sister is mentally and physically disabled - she can not walk, talk, feed herself - to most she'd be viewed as a "vegetable" but to me and my family she is AMAZING! She has such a cheeky personality and is 22 years old! I am 24 and we have an older sister of 25. She was not born with this...a virus ate her brain and what is mainly left is what keeps her alive. She has epileptic fits up to 1000x a day and yes, life wasn't easy but it's all we've ever known and wouldn't change her at all! Doctors said she wouldn't live to being 5, then 10, then 13, then as an adult...well what did they know! As I say she's 22 now!

You could have a "perfect, healthy, normal" child who in 3-4 years you discover has learning difficulties or is "slower" than the average then what? You do what is needed to give your child the best. My sister now lives in a home with 6 other people with full 24hour care and has friends, goes to college etc. Yes a special, adapted college, but a college all the same! She lives 5 minutes down the road from us and we can see her whenever we want. They take them on holidays and she lives as full a life as she can! Disability isn't a drag...it's what you make of the situation that matters.

OP - only you truly know if you could handle this situation but any child - especially one with downs - is the most loyal, loving and special child you could have! They are unconditional and there is so much help out there these days. Your child may only have a mild - moderate case which could be something as simple as having difficulty learning or a problem with hearing...it is one of those things you wouldn't know unless you went ahead and gave this child the chance to show you what s/he can offer. I send all my thoughts to you and hope for the best for you and your family.

 

[jenmcn1]

I'm so sorry to hear this...and sorry to hear your husband is so unsupportive. I can't imagine what you are going through right now. I have worked with special needs children, and especially with downs syndrome kids. All cases are slightly different and I know the first few years are the most difficult usually, but these kids are sooo loving and a lot oif them can eventually gain independence, and carry on somewhat normal for the most part. As for wondering about termination...this is a very personal decision. And people get very heated over this. In my opnion- I don't believe in abortion. I feel very strongly about it...but that's my own opinion...your husband has to respect that you are the one carrying this child and bonding with your baby already. Hugs!!!

 

[Drazic<3]

Maybe the girls rowing could have a bit of class and focus on the OP? I think you might have lost sight a little that real people and real lives are involved here.

Sending huge hun, maybe he is just shocked and scared too. You need to talk and discuss all your options together. Is the hospital arranging someone professional you can talk to? Good luck

 

[luckybreak]

Maybe the girls rowing could have a bit of class and focus on the OP? I think you might have lost sight a little that real people and real lives are involved here.

Sending huge hun, maybe he is just shocked and scared too. You need to talk and discuss all your options together. Is the hospital arranging someone professional you can talk to? Good luck

I was going to comment on the "class" suggestion but I think I am going to walk away on this one...