Positive for trisomy 21 results on NIPT

[Anonymous]

As a a different parent with a 10 year old child who has a rare chromosomal abnormality, I would urge you to have your baby. My son is autistic, has epilepsy, intellectual limitations. He is still MY son, my baby, and he is still a JOY to his father, to me, and to his siblings. It is, perhaps, a paradox, that with a more objectively undesirable situation, I have become a more peaceful, light-hearted person, but it is true. All things…

[Anonymous]

I am so sorry for what you are going through. My son is 8 and one of his best friends has Down syndrome. He is beloved at his school. He cracks me up. We know a few families with children with this diagnosis and they are a blessing. Just one perspective.

[Anonymous]

Anonymous wrote:Np. I'm bumping this older thread for more responses, please. I'd be very grateful to anyone willing to share their experience as I can't discuss my situation in real life with anyone. Thank you.

I am so sorry you are going through this. I have been in your shoes, and it’s so hard. I wish I could give you a big hug right now.

We went back and forth about what to do probably a dozen times. We would watch an inspirational video and decide to continue, then read a depressing article that would make us want to terminate. In the end, the internet was not our best source of information. We requested a referral for a genetics counselor, and they were able to give us unbiased information. Ultimately we decided to continue the pregnancy. However, I still had so many fears about how this condition would affect our child, our family, and me personally. The rest of my pregnancy was very difficult emotionally, and a lot of people were judgmental when they found out about the diagnosis.

Fast forward, and our son with Down syndrome is nearly 4. He has been a wonderful addition to our family. It’s a stereotype that people with Down syndrome are always happy, however our son is generally good natured and fun to be around. He loves music and dancing and playing with his brother. He attends a regular preschool, although in a class with children a year younger, and he has friends and is doing really well. I think his quality of life is pretty good!

Of course, there have been challenges. He has some health issues that we monitor, as well as some developmental delays and sensory issues. Every family we’ve met who has a child with Down syndrome has to deal with a few major issues and several smaller issues. Our son’s biggest problem is speech, but we’ve found other ways to communicate, such as ASL and a speaking app on the iPad.

Raising any child is hard, and raising a child with special needs is harder. That said, it’s not as hard as I thought it would be. My fears were much worse than reality. Our lives are pretty normal, just with more appointments. It’s true that my husband and I have not advanced in our careers because we’ve stayed in jobs that allow us maximum flexibility, but that may have been the case just having kids in general.

Whatever decision you make will be the right decision for your family. However, I would strongly urge you to get counseling no matter what you decide. I found it so helpful to work with a therapist who specialized in prenatal diagnoses. I used Azalea Mental Health. They will help you whether you terminate or continue. https://www.azaleamentalhealth.com/

Deciding is the hardest part. I hope you find peace with whatever decision you make.

[Anonymous]

Anonymous wrote:As a a different parent with a 10 year old child who has a rare chromosomal abnormality, I would urge you to have your baby. My son is autistic, has epilepsy, intellectual limitations. He is still MY son, my baby, and he is still a JOY to his father, to me, and to his siblings. It is, perhaps, a paradox, that with a more objectively undesirable situation, I have become a more peaceful, light-hearted person, but it is true. All things…

That absolutely can be true and it can also be true that someone does not want to take on that burden AND commit other people to that burden (siblings). In a family I knew the adult T21 died alone in a group home. No siblings or family ever visited once the parents were gone.

T21 is also a spectrum disease. One I know was hospitalized for 6+ months with severe heart defect repairs. One died 2 months after birth from the necrotizing disorder that's more common with T21.

[Anonymous]

I’m so sorry. I know how you feel.

This happened to us. I was 37 and had trouble conceiving. When I finally did, it was a shock to test positive for T21. They did the fold test first and then followed up with CVS.

It was devastating. After much discussion and tears, We decided to terminate. We know it was the right decision for us.

We still think of the baby 20 years later. We also still firmly believe it was the right decision for us. No regrets. I still remember my convo with my OB GYN and she told me she would make the same decision. We did subsequently have 2 kids later via IVF. One at 39 and 41.

Sending you prayers. It’s not easy.