December 2015 Moms
amandaluv5
member
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Trying to figure out what to do
amandaluv5
member
so I did the genetic screening and my baby had tested positive for Down syndrome we went to the hospital here that does the further testing by the ultrasounds.. Everything on my ultrasound scan showed normal no signs for Down syndrome but here where I'm trying to figure out what to do... They said that I could do the test for amino testing but it's can cause a miscarriage.. I will raise this baby no matter what and love him with all my heart regardless.. So I'm not sure if I want to do the test because at 38 weeks i am going to be getting induced only for medical reasons and they will be doing the amino testing then.. I'm going through this pregnancy alone and making all my choices alone because the man I'm pregnant by is impossible to talk to we are not together.! I just want advice from other moms what would u do..??
Re: Trying to figure out what to do
I did a quad, then Verifi, then amnio to diagnos Doen syndrome about two weeks ago. His ultrasounds show no markers.
Have you met with an MFM? A genetic counselor? What does your Dr say?
Screenings are just that. Your screening may show an increased risk for Down syndrome but the only diagnosis is through CVS, amnio or after birth.
I chose amnio, after reviewing my doctors statistics with amnio and made the decision so I could prepare to be the best parent I can be.
Amnio at c-section has me confused. Amnio is amniotic fluid being tested after drawn through a needle from your uterus, usually in the second trimester. They would be able to diagnose DS at birth without - until it came time to process social security at which time they require karotype testing - similar - in that the chromosomes are counted but it's not amnio.
In addition, now that we have the diagnosis, we have regular ultrasounds and echocardiogram see how our son is developing and if he may need immediate care at birth as heart defects and other problems are more common with Down syndrome children.
Let me say that I'm not trying to scare you. I was in your shoes and I understand. And I wish someone told me the facts and didn't just hold my hand.
Also, Down syndrome is not as bad as the stigma. Yes, it can come with extremely scary things like heart problems.
I'm glad you will love your child the same either way. And the choices you make are yours but be sure to have the facts.
My husband and I are positive about the diagnosis and we are excited to meet our son, as I'm sure you are!
Feel free to PM me.
Edited for clarity.
One of the benefits of knowing for sure is you will be able to plan if you need to give birth at a hospital with resources for children with special needs. That being said, babies are born with all the time with abnormalities that were not previously detected, so the hospital will get your baby any additional help it would need if they were not able to provide it.
The 20 week anatomy scan will also look for markers of down syndrome, so if you don't feel comfortable getting an amnio now, they can detect later on too. Good luck in your decision!
Honestly the decision is yours, you're not going to make a wrong decision because it's what you think is best.
my advise would be to research it a bit, sleep on it for a few days, if you can find someone you trust to talk to and only do what you feel comfortable doing.
I wish you and your baby all the best *hugs*
I have known a couple people that had the testing done and were told the baby was positive for down syndrome markers, then had the baby and there was no down syndrome or it was much less severe than doctors had predicted.
If it was me, I'd be wanting to get information to prepare and hope I don't need it. Sometimes the bank can help make suggestions to set up for financial needs in the child's future. Also look at programs and schools available in the area, even if there are special parent groups.
I'm the plan for everything type though. I'd rather have it and not need it than need it and feel more stressed trying to scramble around getting it together. I hope this helps.
It sounded like they're wanting to do the amino around the same time you'll be induced? Unless they will want to anyway because of inducing a little early, I would wait and find out at delivery. Back 30 some years ago my mom was scheduled to have a c-section with my brother at 39 weeks so they did an amino a few days before to check his lungs.
And yes, only 50% of children with DS have soft markers.
What screening did you have? The quad is the least accurate, where Harmony, Verifi and MaternT21 tend to be more a accurate.
Remember, 1 in 10 means you have a 9 in 10 chance of a child without a chromosomal abnormality.
Amnio is your choice, 100%. It was important to me to meet the doctor and review her statistics for miscarriage before the procedure. It was also important to me to have a diagnosis rather than wait. I understood the risk and chose to do it. And I would do it again given the same circumstance.
Regardless, I'd love my son the same, but I feel like a better parent, more educated now than I would have been if I hadn't known.
Edited for clarity.
A quick search brought up
https://www.nads.org/
They might be able to help more with resources and their website has a place listing local support groups.
Like others have suggested, ask the MFM doc that you're referred to what their miscarriage rates are. If they're too high for you, keep asking around and find a MFM doc that can do it that has the best mc rates.
If you want my opinion, I think you should do it, just find the best MFM to do it. It's better to be prepared for yourself, babies health needs and to have peace of mind during the rest of your pregnancy.
I would take up @beccachartier offer and pm her since she's been through this and she can be a good support. Sending you lots of love and comforting thoughts through this time. I admire your strength for doing this alone. I couldn't imagine going through all this alone...((((HUGS))))
Please know that I am sending lots of prayers and (((hugs.)))