Just six months before, we had lost our first baby at 20 weeks of gestation to a rare chromosomal disorder called triploidy; it’s a sporadic occurrence that happens at conception, causing the baby to develop with an extra set of chromosomes in every cell of her body. Unfortunately, it is “incompatible with life,” as the doctors say, and our baby had no chance of survival. When we delivered her, we named her “Hope”—one of the most beautiful words in the English language, in our opinion—and as we faced the routine chromosomal testing of our new baby over the next 20 weeks, we held onto hope tightly.
This fall, the new baby—temporarily named “Wolfie” by our students—passed the initial chromosomal tests with flying colors. When we hit the big 20 week ultrasound, however, we once again encountered a quiet ultrasound technician, a silent shuffle into a small conference room with tissues, and a grave-faced doctor informing us that she had some bad news: “Wolfie” had a very rare and serious heart defect called Hypoplastic Left Heart Syndrome. The world stopped for a moment.
When it started again, my husband and I were holding onto each other’s arms and trying to absorb the many differences between the color-coded pictures of normal hearts and the diagram of our baby’s defective heart. The only thing I could understand at the time was this: The entire left side of my baby’s heart didn’t work and would never work, and he would need life-saving open heart surgeries to have a chance at survival.
At the end of the conference, the doctor gave us four options:
1.Wolfie could have three risky open-heart surgeries. The first would take place in the first week of his life, the second at six months, and the third at two years of age. These surgeries would systematically reroute the blood flow so that the right side of his heart would do the work of both sides.
2.If Wolfie were not a good candidate for this surgery, he could be put on a list for a heart transplant.
3.We could give Wolfie comfort care when he was born so that he could pass away peacefully.
4.We could terminate the pregnancy immediately.
We drove home in silence.
My husband spent the rest of the weekend in that silence while I attacked the internet with manic energy. Being a high school English teacher, I desperately needed some control and structure. So I researched Hypoplastic Left Heart Syndrome on every medical website and personal blog I could find. I watched videos of the three surgeries. I dug into the statistics of University of Colorado Children’s Hospital (we live in Littleton, CO) and was encouraged by its highly ranked pediatric cardiology department. I discovered that Wolfie roughly had an 80% chance of surviving the first surgery and a 90% chance of surviving each of the subsequent surgeries. I found stories of many parents who had lost their babies to HLHS, and I cried for them, and I also found many stories of HLHS babies who had thrived. Often, I thought about Hope.
My husband and I grieved deeply as we started to understand our baby’s illness, but we also realized one important thing: where there was no possibility of survival for Hope, Wolfie has a fighting chance.
Wolfie is now seven months old and goes more commonly by the name of Samuel Jerry Leclaire. He has fought through his Norwood surgery, a g-tube surgery and Nissen fundiplication, a central line infection, endocarditis, a stroke, seizures, and an early Glenn surgery. And he still has more battles to face.
This blog is dedicated to his fight and to everyone who would like to be a part of it.
--Kristin and Jason Leclaire
Here's a picture of the little guy at 37 weeks of gestation. When we first started this blog, this is how old he was!
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