This story is written by Kerri Vatour and was originally published on the Children’s Hospital Association’s blog.
The first time Boston Children’s Hospital saved my son’s life, he was 21 hours old.
It wasn’t a surprise—Joey had been diagnosed in utero with both a ventricular septal defect (VSD), a hole between the right and left sides of his heart, and a duodenal stenosis, where a portion of the intestine is so constricted that very little can pass through, by doctors in the Advanced Fetal Care Center.
Upon birth, it was obvious that the latter issue would take precedence, and Dr. Smithers worked his magic in almost six hours. The second time came less than a month later, when his VSD and another heart defect—an atrial septal defect (ASD), or a hole in the upper part of his heart—were repaired by the amazing Frank Pigula, MD.
At that point, we had been inundated with some answers and more questions about our beloved boy. Dr. Smithers uncovered a collection of other maladies during his original surgery—things that were fixed (an omphalocele, where a portion of his liver was coming through his umbilical cord; nodules coming off his organs) and others that weren’t (cleft palate, small cysts in his liver).
Eventually, while he recovered from that procedure in the NICU, he was diagnosed with trisomy 14 mosaic, a genetic condition caused by an extra chromosome No. 14. It’s incredibly rare, with very few recorded cases, and unpredictable, with the condition causing different problems in different children.
The diagnosis provided answers as to why he had so many health issues, but no real answers as to what we could expect in the future. The hospital did everything they could to check him again and again, to make sure we knew as much as we could at such a young age.
Other roadblocks cropped up—the third time they saved his life came when his breathing and heart rate dropped drastically because of an infection and they had to give him an emergency intubation. The fourth came from Dr. Pigula again, when the post-op echocardiogram revealed another heart defect (an anomalous left coronary artery, meaning his artery was connected to the wrong part of his heart) being masked the first two.
This, like his trisomy 14, was also extremely rare. We wondered if we should play the lottery, in the hopes that his extreme luck would take a turn for the best.
After those four life-saving events were in our rear-view mirror, we began to focus on other issues. His weight gain was a concern, as was his ability to eat thanks to his cleft palate and a paralyzed vocal cord, and so he was fitted with a gastrostomy tube (G-tube) for feeding.
His condition, along with the fact that he was six weeks premature and spent the first two months of life in various hospital beds, put him months behind with his physical development. So, the hospital connected us with an early intervention program at our home. We watch and wait for new things to arrive.
All along the way, the doctors and nurses at Boston Children’s Hospital kept us sane. While they saved Joey’s life multiple times, they also made sure that we were aware and comfortable. We took part in rounds every morning, and we heard the spiel about him so often that they let us lead rounds on the day he was discharged.
While the doctors and nurses tended to his emergency intubation after his bradycardia, they were just as concerned with easing our minds, explaining what they were doing, and when he was more stable, bringing us juice because we looked pale. About as pale as two parents would look after walking in on their lifeless infant getting a tube shoved down his throat with alarms dinging from every direction.
A lot of things make for a positive hospital experience. Obviously, the care comes first. Our medical teamcould have treated us like garbage and that would have been fine, as long as they gave our son the best possible treatment.
But it wasn’t just about the care for them. Hospital stays are a human experience, and everything they did focused on that. Keeping parents informed and involved. Staying involved themselves (many of Joey’s doctors would visit him in other wings even after their specialty was taken care of). Remembering what we were going through by living in a hospital for more than two months, missing our house and our dog and our lives.
And, our sanity.
Whenever anyone asks me about Boston Children’s Hospital, I can’t say enough. They’re the best at what they do on all levels and I wouldn’t ever go anywhere else, even though we live almost two hours away. On Thursday, July 10, Joey got his cleft palate surgically repaired, and while we probably could have gone someplace closer to home for such a straight forward procedure, we’re went to Boston because they know us and we know them.
When we had trouble finding a quality nutritionist in our area, we opted to make the drive every month or two for the benefit of having someone we were comfortable with on our case. Every time I think about Joey’s medical issues and what he might face in the future, I’m grateful that I live so close to such an amazing place.
God bless Boston Children’s Hospital.
For more information about fetal cardiology and resources for expectant parents, visit bostonchildrens.org/fetalheart.