Grayson Sulyma

Grayson’s Story

“There was no way I could take away his chance to fight this battle.”

Grayson Sulyma, Trisomy 18, 4/8/2014 to 4/8/2014, Taunton, MA

GraysonAs long as I’m living my baby he’ll be…

We found out I was pregnant in September of 2013. We were over the moon, my older son was so excited to finally be getting a sibling! His reaction was priceless. Our first ultrasound put the baby behind a little over a week which didn’t make sense since I found out so early but we didn’t think much of it.

We had the nt scan twice because he would not cooperate (stubborn like mama from conception lol) and they couldn’t get him at the right angle either time. I got a call that my labs came back abnormal and to call back asap. I thought they were my thyroid labs so I wasn’t worried until I called and got the news. We went in for the harmony test and went to Boston for a level 2 ultrasound while we waited for the results.

In January we found out we were having a boy!! We also found out that he had rocker bottom feet, a clubbed foot, a strawberry shaped head and was tiny for his gestational age. They told us it was very likely he had trisomy 18.

In the days waiting for that ultrasound Google was my best friend so I knew that diagnosis was not good. That ultrasound was the first time I realized the odds were against our baby.

We were encouraged to terminate. Every. Single. Appointment. Up until 24 weeks. He was my baby from the day 2 lines showed up on that stick and I loved him. There was no way I could take away his chance to fight this battle.

I did end up with a few good drs that I will always be thankful for and all of the ultrasound techs were great. One even caught a 3d of him smiling 🙂 He was a character even inside. He hated ultrasounds. He would kick his feet just like a toddler throwing a fit lol.

I’m especially thankful for the Dr that actually listened to our wishes. If not for her, I don’t think we would have gotten to meet Grayson alive. She sent me for an emergency csection when he failed his bpp and his cord blood flow was absent.

So he came, into the world as quiet as a mouse, on April 8th 2014 at 1:42 pm weighing in at a whopping 1lb 15oz. He was beautiful. He was perfect. There was no way he had this trisomy 18 diagnosis. But he did.

He stayed with us for 9 hours but his lungs just weren’t developed enough. We had to make the decision to not be selfish and not let him suffer anymore. That’s a decision no parent should ever have to make.

He brought his family so close together. He taught us so much in his short life that we will remember forever. I will always feel blessed and lucky to have had an angel with me. He truly was too beautiful for earth.

Amanda Gray