Reply to Positive for trisomy 21 results on NIPT

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[quote=Anonymous][quote=Anonymous]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. [/quote]

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.[/quote]

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