Whatever you think of Republican presidential candidate, Rick Santorum, you might want to say a prayer for his 3-year-old daughter, Isabella, who was admitted to the hospital last month with complications from a chromosomal condition called Trisomy 18.
What little I know about Trisomy 18 I learned during an encounter with Sue and Mike Reed in 2004 while I was a chaplain for Sutter Memorial Hospital in Sacramento, Calif.
It was there I learned that Trisomy 18 is caused by extra material from chromosome 18. It’s three times more common in girls than boys. Half of the babies don’t survive their birth week while the remaining half experience serious developmental problems.
Sue and Mike learned about the deformity when Sue was 44 years old and pregnant with her second child. Because older mothers carry a greater risk of genetic deformities, Sue’s doctors scheduled genetic testing. When results showed they had a girl, they named her Gabriella Grace — or “Gi-Gi” for short.
A week after a genetic test, Sue recalls waking with a feeling that “something’s not OK.” That afternoon, a doctor told the couple there was a 95 percent certainty that Gi-Gi had Trisomy 18 and that most women terminate these pregnancies.
Since Sue had an abortion as a teenager, she decided that she “…wouldn’t do it again. “I knew in my heart of hearts that God made Gi-Gi exactly as intended because Scripture says, ‘Before I formed you in the womb, I knew you. Before you were born, I set you apart.’ ”
Sue believed, “God was asking me to honor this life. She was our daughter with a bad diagnosis, but the diagnosis was secondary. Still, with each doctor’s visit, I was sure Gi-Gi wouldn’t have a heartbeat.”
But as their daughter’s heart continued to beat, Sue and Mike planned for a live birth, asking that Gi-Gi be given only comfort care and then allowed a natural death. “We just want to meet her and love her,” they told the doctors, “for as long as she is going to be with us.”
The night before, Sue wrote a letter to Gi-Gi telling her, “Some people only dream of angels, but I get to actually give birth to one and then hold her in my arms. I am so very blessed. See you tomorrow, sweet girl.”
So, at 10 a.m. Feb. 5, 2004, I entered labor and delivery to find Mike and Sue with the video camera most expectant parents happily carry. Only their video recorder would record the two most sacred moments of all — birth and death.
“I expected a deformed baby,” Sue admitted, “but she was beautiful. It was like a visitor from heaven. … It was like God showing me that what we did was the ‘faith thing.’ I remember feeling like my heart was exploding so joyfully. It was like seeing God on Earth.
“It struck home that God hears, sees, and answers prayers. Even though I’d wished for a better outcome, I’m grateful that God chose us. I never thought I could walk through something like this. It’s made me realize how every moment in life is important — even if it was just 80 minutes. I packed a lot of parenthood in those 80 minutes.”
“Sometimes, we only get a moment,” Sue said. “GiGi’s life was that moment.”
Norris Burkes is a syndicated columnist, national speaker and author of “No Small Miracles.” He also serves as an Air National Guard chaplain and is board-certified in the Association of Professional Chaplains. You can call him at 321-549-2500, email him at [email protected], visit his website thechaplain.net or write him at P.O. Box 247, Elk Grove, CA 95759.
