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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Down Syndrome- False Positive Amniocentesis Test Result

17 replies

byalarosa12 · 23/09/2015 20:32

Hi everyone,

Very sadly I just found out from amniocentesis test result that my baby boy is positive for Down Syndrome. I know that this means in all probability that my baby does have Down's. But I am hopeful that there is someone out there who has gone through amniocentesis test with results that read "positive" when the baby was actually fine. I know that it is not end of the world, however, having started to think about all the difficulties that my baby will face for the rest of his life, it makes me very upset, desperate and emotionally so weak.

Please give me any advice, or share your experiences that you might have.

Thank you so much

OP posts:

chopsface · 23/09/2015 21:19

Sorry the result wasn't the one you were hoping for :-( I have experience of caring for Down's children and they are lovely caring people with a lot to give and many lead semi independent happy lives and get jobs. I know there are health issues as well as learning issues that come with the syndrome but you will tackle them as a family and you can be happy. You will become a stronger person and there is loads of support out there. Good luck with everything x

horsewalksintoabar · 23/09/2015 21:23

I will inbox you now.

PacificDogwod · 23/09/2015 21:26

You need to find out more about your result.

There is variations (called 'mosaic') where the outcome is far less clear cut than with 'standard' trisomy 21.

I am sorry you have to deal with this worry

PacificDogwod · 23/09/2015 21:26

There are variations…..
Sorry

Junosmum · 23/09/2015 21:27

Really sorry that you are going through this. I work with some adults with down syndrome and other SENs. It must have been a shock for you. You won't know the extent of his condition for a while but you will love him and he you.xx

Original poster

byalarosa12 · 25/09/2015 01:21

Thank you so much for your warm wishes. I'd really hope that this would be something that it will go away and never ever come back again. Whatever the decision will be, both it'll hurt so deeply. I am sure I will ask the question "what if....?" till end of my life. It's the hardest decision to end a life! I am not sure if I would have enough confidence and strength to come over this to look after/raise a child affected by DS. It is because I am quite emotional and not very strong person to cope with such issues. On the other hand I have a daughter who is nearly 5, so as every child she would want her mummy/daddy's care to be around her all the time.

I only wish this would be a nightmare which would end when I wake up. :((((

Take care all xxxx

OP posts:

HeteronormativeHaybales · 25/09/2015 01:37

I mean this in the kindest possible way - you have had a shock and are struggling to process it - what you need to be focusing on now is not hope for a false positive, but what you are going to do right now and the longer term beyond that.

How far along are you in your pregnancy? You can have a detailed anomaly scan to give you a degree of an idea of what physical health issues you may be looking at. There is an extremely wide variety of issues and degrees of affectedness within the category 'Down's Syndrome'. There are many parents on this site and elsewhere who can talk to you about their particular experience of raising a child with DS. I believe there is also an organisation calles something like Antenatal Results and Choices which it might be worth contacting to talk things through.

Whatever you end up deciding, take care of yourself.

Atenco · 25/09/2015 04:15

Downs children are gorgeous and affectionate, however dealing with their disabilities is a lot of responsability and usually a responsability for life. So I'm so sorry you have had this news and "Whatever you end up deciding, take care of yourself" and "whatever you decide, you will be deciding thinking of the quality of life you can give your child, it is a difficult decision but not selfish.

Original poster

byalarosa12 · 25/09/2015 14:05

Hi HeteronormativeHaybales, like you said it is really a shock and hard to process.

I am exactly 21 weeks today, have not got much time left, so trying to decide as soon as I could.

Unfortunately I have no one around me who is affected by DS. Therefore have not got any clue about the disease. Some people find it quite easy to cope with a child with DS but for some is really a hard work. It all depends on individual as well as the severity of the childs situation. And am not sure if I am really strong enough to cope with it if my child will have so many physical problems, operations, endless hospital appointments, etc. Thinking of seeing him in that way would make me emotionally destroyed, so with that morale how I am going to help him :((((

Also whats gonna happen when both parents died, who is going to look after him. Even its my own child it is a horrible thing to think about and make a decision on someone elses life, whether to carry on or terminate.

OP posts:

Original poster

byalarosa12 · 25/09/2015 14:26

Hi Atenco, thank you for your sincere comments.

You're right, its a responsibility for life! Unfortunately no cure of DS. Also have a daughter who is nearly 5 years old. So obviously she is little as well and wants mummys attention and care. My husband says that he will support me with looking after him if we decide to carry on with the pregnancy. But we all know at the end mothers are the one who have to do everything and for the other to make sure to make ends meet in order to support the family.

Have no family in the UK as well so I can't ask for extra help when I need it most. Thankfully mum is coming next week to support us. However, it is not an issue for a month or so as you said it is till end of the life.

OP posts:

ZZZZ1111 · 25/09/2015 19:32

Hi, if you're on facebook check out 'Ollie and Cameron" - a page set up by the mum of twin boys with DS with info, videos, photos etc so you can learn something about their journey so far. I strongly advise you to learn all you can about the condition before you make your decision. There are parent support groups that you can find on the internet, so you may want to speak to a parent about their experiences etc.

Original poster

byalarosa12 · 25/09/2015 20:30

Thank you ZZZZ1111, I will check the page on facebook straight away. We found a parent support group in London, they'll meet on the 1st of Oct. its a bit far from where we live but its worth going and getting some ideas, advices from parents. Time flies really quick, I am kind of started to getting stressed about that as well.

OP posts:

WhoTheFuckIsSimon · 25/09/2015 20:35

You can talk to ARC charity, they have counsellors on the phone I think to talk to.

I wish you all the best whatever you decide.

fairgroundsnack · 25/09/2015 20:41

Take a look at 'Don't Be Sorry' too - Facebook and blog. It's by a lady whose eldest child has DS - it was a complete surprise when he was born. He is a lovely little chap and she writes positively and honestly about life with a child with DS.

MedSchoolRat · 25/09/2015 20:49

You need a detailed scan, that will tell you a lot about your baby.
Downs Syndrome is a risk factor for other things, but the risk factor is never 100% guaranteed (if you see what I mean).
No one should judge you for whatever you decide, btw, because they didn't have your life or baby. Good luck. x

Grizzer · 26/09/2015 18:35

Sorry to hear your news. As far as I know both the CVS & amnio tests are 100% which is why people have them despite the small mc risk. I was pregnant with a daughter with down's in 2012. We went through all the same things - who will look after her when we die etc (we had dd1 & didn't want her to feel she was forced in to being a carer). I was of the belief anything can happen & we can't predict the future so we would deal with each thing as it came. We had a local children's centre that were in contact with me as soon as the hospital told them & they offered me a lot of support (they had a down's unit). Do you have anything like that near you? Your hospital can advise you. They have to give you worst case scenarios but remember they are just that. Down's children do have more health issues than other children but they also have so many lovely qualities that not all children have! Sadly our dd had severe heart & lung problems (not linked with the down's) & didn't make it. Everyone will give you an opinion but no one knows what they would really do unless they are actually faced with the situation (I always swore I would never have a CVS test because of the risk but when faced with the reality I've had it the next day!)
You will do what is right for you & your family. Neither decision will be easy & I recommend a few counselling sessions whichever decision you make.
I hope you get the support you need xx

Angel02 · 04/01/2023 03:11

Hey there -more than 5 years later but anyways-,

i am not a mum neither am i expecting in any sort of way. I am 20 and have something to say about this amniotic test. I remember my mum had told me that the first amniotic fluid test results showed i had down syndrome, and she was almost ready to "kill" me, but the doctor told her to do another test to check if i really had it. And no, i didnt. Basically not 100% accurate but im glad im still here😯hugs and love to all those who do have down syndrome or any other type eg edwards etc. I am a biomed student and God am I surprised to learn the stuff that almost stopped my life😵

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