A Trisomy 13 Angel
In August 2018, my husband and I found out we were expecting our first child, due April 2019. My pregnancy was picture perfect. Every ultrasound looked good, and because we had no family history of genetic or health conditions, we chose not to have genetic testing done.
On the evening of March 21st, I left work early because of intense contractions. I tried to rest, but by March 22nd I had been to the hospital twice. I was finally admitted around 8 p.m. After more than 36 hours of labor, our first child, Greyson Rhett, was born on March 23rd.
The moment Greyson was laid on my chest, my husband and I noticed abnormalities. He was born with a clubbed foot, extra pinkies on both hands, low-set ears, a slanted forehead, and sunken eyes, among other features. Three to four hours passed, and we couldn’t get him to latch to breastfeed or take a bottle. His blood sugar started dropping, eventually reaching as low as 6.
The next morning, the pediatrician decided Greyson needed to be transferred to a level 4 NICU. My heart shattered. I didn’t know what was wrong with my baby, and now he was being taken to a different hospital than the one I was in.
Once Greyson arrived in the NICU, doctors began blood tests, CT scans, MRIs, X-rays, and genetic testing. Four days later, we sat down with a pediatric cardiologist, who told us Greyson had a congenital heart defect called Tetralogy of Fallot. We began discussing when he might need heart surgery and what his quality of life might look like.
Two days later, we received a call from the NICU doctor. We rushed to the hospital and were escorted to a conference room. I remember every detail. Doctors, nurses, care specialists, genetic counselors, and social workers filled the room. I finally said, “Will someone please tell me what’s wrong?”
The genetic counselor said, “Greyson has Trisomy 13, also known as Patau Syndrome.” My husband and I had never heard of it. We were speechless. The geneticist explained that while Down syndrome involves three copies of chromosome 21, Trisomy 13 involves three copies of chromosome 13. It occurs in about 1 in 5,000 to 12,000 births. The median survival is 7 to 10 days, and only 5 percent of babies who are born alive survive to their first birthday.
Hearing those words broke me in a way I will never be able to describe. Why my son? Why did God let this happen? When I could finally speak, I said, “I need to go back to my son. I don’t want to be in this room anymore.”
We spent 42 days in the NICU, and on April 20th, Greyson came home with only an NG tube. Those first few months were challenging as we returned to work full time and took Greyson to three to five appointments a week. He saw 14 specialists and was under palliative care through hospice. Greyson brought new meaning to life and filled our home with joy. Every day was a gift.
Greyson began PT and OT at 6 months old. At 8 months, he underwent surgery for a G-tube placement, ear tubes, and a LADD’s procedure.
On September 7, 2021, our worst nightmare happened. Greyson peacefully passed away at home in his sleep.
We were blessed with two and a half years, but it will never be long enough. We miss Greyson with every breath, but we know he is always with us.
