Receiving a Prenatal Diagnosis of Down Syndrome for a Second Time
I’ll never forget that phone call. It changed my life forever. I honestly don’t remember her exact words, because all I heard was, “Down syndrome.” I had been waiting for a phone call from our geneticist to confirm our 10 week, unborn baby was a girl who had Turner’s Syndrome. Those were the markers seen on the ultrasound, that was what I had researched the past agonizing week while we waited for our Panorama test results, that is what I prepared myself for: a baby girl with Turner’s Syndrome.
Surely, God would never give me a baby with Down syndrome. He knew me, so He knew better than that. He knew I wasn’t strong enough and didn’t have enough patience. I spent so much time praying that week while we waited that our baby didn’t have Down syndrome simply because I didn’t think I could give it what it needed if it did. So, when I heard, “It’s a boy,” all my planning for Turner’s Syndrome went out the window since it only affects girls. For a moment, I thought my prayers for a perfectly healthy, “normal” baby had come true. Surely my baby couldn’t have Down syndrome. All they saw on the ultrasound was the extra fluid. That can mean nothing, right? I was only 26 after all, and I thought only older women have babies with Down syndrome. Then, she said it, “Down syndrome.” It was followed by the disclaimers about how the tests aren’t 100 percent accurate, and it could be wrong, but when coupled with the ultrasound, it was pretty likely he had Down Syndrome. We scheduled appointments, and she said she was sorry. I waited until I hung up to start crying. One very short phone call changed my life forever.
It took a few days for it to really sink in that I was going to have a child with a disability. I contacted our local Down Syndrome Association, and was very encouraged by them. They were the first people (aside from family) to tell me, “congratulations,” to not act as though this was the worst news we could have possibly gotten. I remember being scared, but loving our little boy no less. He was still my son. My precious, little gift whom God had chosen me to have. It wasn’t until our first ultrasound after our diagnosis that I truly embraced the diagnosis though.
I was about 12 weeks pregnant with Wyatt at that point, and the ultrasound didn’t show any improvements. There was still a lot of fluid under Wyatt’s skin and surrounding his organs. His prognosis was not good, we knew that, but when our specialist suggested aborting because of Down syndrome and fluid, it felt like a blow to the stomach. He was not seeing the same thing I was on that ultrasound screen, and it broke my heart. I saw a beautiful baby boy, crafted together by an awesome God who I believe makes no mistakes — but he saw a diagnosis and fluid. It was in that moment I realized I had no time to be upset about his diagnosis, I had no time to wonder, “why me?” If I wasn’t fully committed to protecting Wyatt, no one else would be either. I adamantly told our doctor that abortion was absolutely not an option for us, and we were told we should come back in four weeks, sooner, if we wanted to, but it wouldn’t really make a difference.
We had ultrasounds every two weeks from that point on, really just for my own peace of mind, until at 17 weeks no heartbeat was found. Wyatt James Yeary was born sleeping on March 7th, 2016.
He was our first little glimpse into the Down syndrome community, and when he passed I realized how sad I was we weren’t going to get to experience a deeper relationship with the people we had already come to know.
We had no idea we would get that opportunity just one year later.
We are fairly unique in that we have had two children with Down syndrome. After Hannah was born, a geneticist from Nationwide Children’s Hospital (where she spent time in the NICU) came to talk with us, and she basically said some people are more prone to having children with Trisomy 21 than others. She presented it negatively, and had a poor bedside manner, but she did tell us there had been one study conducted with women who had more than one child with Down syndrome, and they couldn’t conclusively find any reason for it. Since then, I’ve seen the theory that women who have a mutation of the MTHFR gene are more likely to have children with Down syndrome, as well as miscarriages. Ultimately, it doesn’t matter, but people are usually surprised to find out that I’ve had more than one child with Down syndrome.
After we lost Wyatt, we decided to let God have complete control over our fertility, so we weren’t trying for, or preventing pregnancy. Just three months after Wyatt was born, we found out I was pregnant with Hannah. We had previously decided we were going to have the Panorama test done again simply to put our minds at ease. The Panorama test is one of many non-invasive genetic screening tests that can be done with a simple blood draw after 10 weeks. There is a lot of controversy surrounding them, but I am glad we had it done so that we could prepare for Hannah by getting connected with our local Down Syndrome Association, as well as becoming educated about Down syndrome.
I had the blood draw done at 10 weeks, and waited for a week to receive the results. When my OB called me, I was sure she was going to say the results came back normal. When she said we were having a little baby girl with Down syndrome, I broke down immediately. I thought for sure it meant we were going to lose this baby, too. As soon as I hung up the phone, I called my mom sobbing. I had peace about the diagnosis, but I was a wreck at the thought of potentially losing another baby.
Since the test results came back as high likelihood for Down syndrome, we went in for an ultrasound the same week just to make sure everything looked OK. It was like our ultrasound with Wyatt all over again. They told us Hannah had hydrops fetalis (fluid under her skin and around her organs), and that we should expect her to pass in the next several weeks. We were told we could come back for a follow up ultrasound whenever we felt like it; the doctor didn’t do much to hide his certainty that she wouldn’t make it. We decided to go back in two weeks, and in that short amount of time, everything changed. The fluid had decreased, and the doctor was optimistic that she would make it to full-term.
She did just that, and Hannah Joy was born February 7, 2017 at 37 weeks. She’s our miracle rainbow baby! After 32 days in the NICU, we brought Hannah home, and she has changed our lives for the better ever since.
Follow this journey at Woven With 47.
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