Baby Grace

It was my birthday, and our family was waiting to hear the news on the gender of our fourth child with excitement and anticipation. ‘It’s a girl’ we heard the sonographer declare and our other three kids started to cheer. We were pleased and felt complete as we saw all her working parts--fingers and toes wiggling around on the screen. I’d been through a few of these before, but this one started to seem especially long, and I started to get a little impatient because she couldn’t get a good picture of the baby’s heart. Finally she sent us on our way, and said we’d probably have to come back again sometime for another ultrasound. I thought it was no big deal, things like that happen all the time, don’t they?

Little did I know then how rare and amazing my baby’s heart was. After many more tests we understood our daughter, Grace, had Hypoplastic Left Heart Syndrome with an Intact Atrial Septum—a congenital heart defect incompatible with life. Babies with HLHS can have a series of three open-heart surgeries after birth and increase their survival rate to about 85%, but the additional complication of an Intact Atrial Septum causes lung damage in-utero and even with the open heart surgeries, only about 20% survive.

 

After dozens of doctor visits, ultrasounds, and disappointing news, I read a news article about Baby Jake who had an experimental procedure done in-utero at Children’s Hospital Boston. I talked with doctors from the Advanced Fetal Care Center over the phone, and felt a renewed hope—I knew they would be able to help Grace. A few weeks later my husband and I traveled from Virginia to Boston to have my first surgery ever, and Baby Grace’s first as well. A team of 16 doctors was required for this fetal intervention, which actually took place at Brigham and Women’s Hospital. The plan was to open the baby’s atrial septum with a balloon, and if possible, place a stent to keep the septum open for the remaining 10 weeks of gestation. The ballooning had been done a few times before with little success, but the stent placement would be a first.

 

When I awoke from the surgery, everyone was pleased. The stent was placed perfectly, and all I had to show for it was a small band-aid on my belly. After 24 hours of observation in the hospital, I flew home to my family the next day. Everything continued to go well as my doctors in Virginia monitored the pregnancy until about 37 weeks. At this point I travelled back to Boston to await the delivery of Baby Grace. I was so fortunate to stay at the wonderful Devon Nicole House during this time—a home away from home for families that have children receiving care at Children's Hospital.

January 10th 2006 was the day we had waited for. After a normal induction and delivery, Grace was born pink, weighing 8lbs 3oz and saturation levels in the 90s. It was a miracle! Everyone was surprised she did not need a breathing tube when she was born. When she was three days old she underwent the required open heart surgery for HLHS babies and had the life-saving stent removed. The doctors and nurses at CHB were wonderful and Grace’s recovery was amazing—better than anyone could have anticipated. She flew home with us to Virginia when she was 18 days old. She was Amazing Grace.

 

After such a remarkable recovery, mostly due to this first ever in-utero procedure, Baby Grace became somewhat of a celebrity! She was on the front page of the Boston Globe and the Washington Post, had several TV news spots, a press conference, a magazine photo shoot, and a call from the CBS Morning Show. Because I had first heard about the Advanced Fetal Care Center from a news article myself, I felt strongly about letting other families learn about it through Baby Grace’s story.

Grace continued to thrive and was eating well and gaining weight just like any healthy newborn. Her meds were down to just a half baby aspirin daily, and our home nurse said she was doing so well she wouldn’t have to come visit us for quite a while. We had been so blessed and were extremely grateful to have our whole family home together for this time.

 

We didn’t know it would be so short, however. Amazing Grace had fulfilled her earthly mission and 18 days after we brought her home, she left for her heavenly home. I picked her up after she awoke from a short nap that evening, and she could not be consoled. She was in my arms alive one moment, and gone the next. We tried everything to save her and bring her back, but it wasn’t meant to be. We’re still not sure exactly what happened—autopsy results were inconclusive, so cause of death was inferred an arrhythmia. Although I don’t really have a good physical explanation for her death, spiritually I believe her time here was simply complete.

I will always take comfort though, knowing that I did everything in my power to save Grace. My wish now is that her story will someday give hope to another family feeling hopeless. And that maybe one more life can be saved because of the legacy she has left. I hope all parents can have this blessing of comfort—knowing that they have done everything they can for their child.

 

 

The Ellianna Grace foundation can help bring that comfort. By providing families with the means to get to the Advanced Fetal Care Center for these life-saving procedures, this foundation provides a priceless gift. Please support this cause and these families who cannot get the care they need anywhere else but at Children’s Hospital Boston.

 

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