2nd Trimester
My baby has a thick neck??...Down's Syndrome??
I had an ultrasound at 22 weeks and my baby boy has a thick neck. Its a 6.5 and the doctor said it is suppose to be a 6. They said this could mean he has down's syndrome. But the blood test I had a 18 weeks came back great. He only had a 1 in 40,000 chance of having down's syndrom but then they found that his neck was thicker than normal. The genetic counselor said that with him having a thicker neck it increases his chance of having down's by 10-20%. Even with that he only has a 1 in 2,000 chance of having down's. They offered an aminocentesis which is where they draw the fluid out of the sac that the baby is in. But I had a 1 in 300 of going into labor early because of the test. So we didnt have it done, we were to scared of something going wrong and losing our son. We had some blood test done that could look at the 18th, 21st, and x chromosomes. My husband and I werent suppose to ever have a baby and this pregnancy was an unexpected thing. We are so lucky we got pregnant because I have PCOS. I am very worried about my son and right now we are waiting for the results of the blood test. Any advice on getting through the waiting of the results without going crazy and if it does come back he has down's, any advice on raising a child with down's syndrome. Thanks to anyone with any advice.
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Re: My baby has a thick neck??...Down's Syndrome??
Lots of love.
That's my first bit of advice.
After that, make sure you look into the local centers that support such things (in my area we have NEDSRA - its a community center style sports program.) That will introduce him/her to many boys and girls like him/her.
and you to parents that can help.
I can't advise on the not going crazy waiting for results because I am a worry wart lol. Hopefully everything goes great though
First of all, this is why I hate genetic testing. I feel like it gives you un-needed panic or a false sense of hope since there is such a wide range of error in these tests. Second, it sounds to me like even if your baby does have Downs that you won't be able/want to abort at this point, correct? In that case, is everything OK with the heart? If it is, why is it so important to you to find out that the baby how Downs ahead of time? If there's a heart problem then that would need to be taken care of or watched immediately, but if not there's really nothing different you need to do for a baby with Downs for at least the first year. You will have plenty of time to research therapy and service options in your area after the birth and don't need to buy any special furniture or monitors or anything.
So my advice is to not stress about it. I cannot tell you how many people I know were told "OMG there's something wrong!" at their 12, 18, 20, etc. week ultrasounds that ended up being non-existent (or not a problem) at the birth or even later ultrasounds. And even if your baby is born with Downs, it's not a death sentence. With medical advancements and therapy options children and adults living with Downs can still live healthy lives and even have jobs and make an income.
B born 7/15/13, C born 3/2/15, #3 on the way May '17
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First of all, I understand how frustrating the "waiting game is". Our LO had a 25% chance of having cystic fibrosis. I knew that no matter what I was not going to terminate the pregnancy, but I chose to have a CVS (similar to an amnio, but can be done earlier in the pregnancy) because I just wanted to know. I am a total planner, and would have wanted to do a lot of research/planning ahead of time (even though we would have had time to research after the baby is born), and at the end of the day, I just wanted to know. Having a child with significant special needs is a huge life changing difference between having one without. I am not saying it is a bad difference, but no one can argue that it isn't significant. Luckily, our story ended in our LO not having CF, and our CVS went well. Ultimately, I was happy I found out ahead of time and put my mind at ease that our baby was healthy.
On another note, regarding the risks of amnio, the 1 out of 300 is a national statistic. If your OB is someone that has several years of experience, has performed thousands of these and is someone that you trust, I would go ahead and have the procedure. From what I have been told by my doctors, this national statistic includes doctors that are less qualified or experienced performing the procedure, and the ultimate risk really is lower if your OB does not fall into that category. Take that with a grain of salt, because its just my personal opinion, based on what my doctors have told me, but I do believe that rationale.
No first hand advice about raising a child with down's syndrome, but as a music teacher who has worked with special needs children, I can say that my students with Down's were some of my favorite kids I've ever had (even though I know I am not supposed to have favorites lol).
Try not to worry too much, even though I know how hard that is. The genetic counselor told me that the blood results weigh more heavily into a risk assessment than the neck measurement. Plus, the neck measurement is most accurate in detecting possible issues between 11-13 weeks bc that's where most of the data is. Remember that an increased risk doesn't equal a diagnosis in the slightest - its just info that you can use to then make an informed choice about the pros and cons of further testing.
They had me talk to a genetic couselor to explain everything. Then they had a more indepth ultrasound to look for the down syndrom soft markers. She had no soft markers. Maybe you can ask for the in depth ultrasound? I know LOs neck is already a soft marker, but that may be the only one and it may ease your mind if all else is ok.
After the in depth ultrasound her chances of down syndrom were at 1 in 408 which was no longer "high risk". They asked if I wanted an amnio again. And the answer was absolutely no! I see no point in risking a childs LIFE just so the parents can know. At that point it was a 1 in 408 chance of downs and if I did the amnio a 1 in 200 chance of miscarriage... uh yeah, no amnio. I felt at ease after that ultrasound.
IF your child has down syndrom, down syndrom people are always so happy and sweet. They can live perfectly normal lives.