Are the doctors wrong?

Anonymous

Are the doctors wrong?

I had my 12 week Down syndrome scan. I've been told that my baby has a massive chance of having Down syndrome or Edwards etc etc aswell as fluid on the lungs. I've been told the chances my baby is healthy is very very low. I need to go for further testing and have been referred to the baby hospital in my area but with also the option of getting a very expensive blood test called the "harmony" test. Has a doctor go
This wrong? I'm 21 years old! Healthy! No family members having anything like this. I can't stop crying, I feel so angry at all the doctors and I know I shouldn't. Anything you can give me to give me
Hope or to understand how the hell this happened? Please note, the doctor doesn't know exactly what's happening but she said there's a chance
My baby might not survive longer then a few hours at birth. Obviously we will do more testing but I just need something...

Posted in:  Relationships & Marriage, Mental Health, Loss & Grief, Parenthood Guilt, Health & Wellbeing, Pregnancy, Baby & Toddler

7 Replies

Anonymous

It's ok to feel angry and shock etc. I remember when my son was diagnosed with one of the first of a long list of things as a toddler. I was so upset, I cried for ages, I was angry, I didn't want to believe it, hoped the doctors were wrong etc. I still go through the same feelings with each new diagnosis.
Life isn't fair. I'm sorry, it just isn't. Sometimes just stuff happens. I know it's easy to think it will happen to other people, but someone has to be the other people.
I wish I could give you a big hug.
Definitely get the harmony test. I'm sorry yoibare going through this.

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Anonymous

If you have the harmony test they will still have to do an amnio to confirm. But if you have the money then get the test, if that says very low chance of anything wrong then refuse the amnio and just continue with pregnancy.

Personally I find Down syndrome children ABSOLUTELY ADORABLE. They are like any normal child just a bit behind, they are so kind and loving and can grow up and live alone and take care of themselves. It's not a death sentence and it's not the worst thing to happen.

But I also have a very close friend of mine who was told the same as you at the scan, even that the baby wouldn't survive long after birth most likely and she was told to terminate. She had tried for about 5 years for that baby so she said she didn't care and had the baby. And guess what? Baby was perfect!!!!!

In saying that, if you wouldn't cope with it if something was wrong you are very young and it's unlikely to happen again if you decide to terminate and try again.

I wish you all the best xx

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Anonymous

Also, I feel like if it was me and they said my baby wouldn't survive long after birth I would 100% go through with the pregnancy. If you terminate you'll grieve for the rest of your life for the baby you never got to meet. If you keep it you will get to meet your baby and know you gave it the best chance you could. There would be no lifelong suffering for the child but you get to meet each other for even a tiny while and you will be able to grieve properly. But that's just my personal opinion. Not everyone would feel that way.

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Kelly De Vries

Kelly here, from The Imperfect Mum team. 

We normally post in order, but I've just put your question up now as I feel the longer you are looking for answers - the more stressed your body may be. 

Big hugs and I hope you keep us informed on your journey! 

xKelly 

A link to the facebook responses: https://www.facebook.com/Theimperfectmum/posts/1284976384902322

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Anonymous

I think you should fork out the money for the harmony test and/or get a referall to see an OB. At my 12 week scan I was told my baby has a high risk of down syndrome. Im 24 years old and no history of DS in the family so I went and saw an OB who took a more indepth ultrasound and changed my results to a 1 out of 1200 chance of DS. Im 30 weeks along now and while I still have to get scans every 4 weeks to make sure bubs is growing properly due to my low Papp-a, so far so good and my baby is healthy and growing as expected. Good luck I wish you all the best and know how terrifying this is for you.

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Karyn Dexter

I was told my baby had Down Syndrome ave a heart defect and would probably die in utero, or if she was born she would never be functional. They couldn't have been more wrong. Yes, she has Down Syndrome but she is highly functional, does what all the other kids do, smart and amazing with technology. She had to have her heart fixed but it was a common defect that they are great at repairing, it occurs often in typical children too. She is very healthy, happy and will be fully able to live independently. She is 11 at the moment.

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Anonymous

I was given the bleak talk too based on six soft markers for t21 and t18. I opted for another scan only and was told the markers were fine. We knew if our baby had ds we were ok with that and just wanted to make sure he had what he needed at birth. They told us he was perfectly healthy. Fast forward to birth and he is perfectly healthy. He has a confirmed diagnosis of ds and at 13 months old hasn't seen a hospital since his birth. Love him to bits. Do what's right for you.

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