Heart Hero of the Month APRIL 2022
Story by, ❤️Mom Kristine
This is a story of dates. Dates that are forever etched in my memory. November 6, 2012, was the first time I had ever heard the words, Congenital Heart Defect. This was my first pregnancy, and I was considered “advanced maternal age” at 35. I had all the tests run and they were all great, so I naively went to my anatomy scan only thinking I’d find out if I was having a boy or a girl. Unfortunately, I found out much more than that. My world was turned upside down in a matter of minutes. I was immediately sent to a pediatric cardiologist, who upon viewing my child’s heart, proceeded to tell me how hard life would be for us and mentioned termination numerous times. When we left, he handed us his business card, with 2 words (Fontan and Heterotaxy) written on the back and told us to go home and google them. Needless to say, we found a new pediatric cardiologist and after some research made our decision to be followed and have all surgeries at Children’s National Hospital in Washington, D.C. Our child was diagnosed as having Double Outlet Right Ventricle with a hypoplastic left ventricle.
Gilbert Benjamin Slovis was born on March 15, 2013. I chose to be induced at the hospital next to Children’s National. I ended up requiring a c-section, so I only was able to see Gilbert and hold him very briefly before he was transported to Children’s National next door. My husband stayed with him until I could be discharged 2 days later. He was perfect and it was so hard for me to believe that something so wrong was going on inside of him when he was so perfect on the outside.
March 21, 2013, is the date of Gilbert’s first open heart surgery at 6 days old to place a band around his pulmonary artery. His surgery went well but his blood wasn’t quite mixing the way they wanted it to, so he had an atrial septostomy done at the bedside the following day. He recovered well from the surgery but stayed in the hospital for a month working on feeding issues.
August 9, 2013, is the date of Gilbert’s second open-heart surgery, the bi-directional Glenn. He recovered well from this surgery and thankfully it was a much shorter stay.
Around the time Gilbert was 10 months old, his early intervention OT mentioned the fact that his right hand stayed in a fist most of the time and he wasn’t grabbing items with it, and she suggested we see a neurologist. The neurologist scheduled an EEG that showed some slowing of brain waves on the left side of his brain. We held off on doing a sedated MRI until he had another procedure that he would need to be sedated for. The MRI showed that Gilbert had suffered a large MCA stroke on the left side of his brain that affected his right side. We can’t pinpoint when it exactly happened but sometime between his first and second surgery. The neurologist was quite surprised at his mobility for as large of an area that was affected. He has some mild hemiparesis that mainly affects his right arm/hand.
June 10, 2015, was his third open-heart surgery called the Intra-extra cardiac fenestrated Fontan. Recovering well from this surgery, we thought his surgery journey was over.
Unfortunately, we were wrong. We were down to annual cardiology visits at this point. Gilbert had a Cath to close his fenestration and they weren’t able to due to the increase in pressures in his ventricle. Approximately, 3 years ago, his cardiologist began watching an obstruction that had been present since the beginning but began to cause more issues and making his heart work a little harder than it should. Another heart Cath, transesophageal echo and cardiac MRI were performed in September 2021 and it was determined that they would need to intervene and he would need another open-heart surgery to repair.
January 11, 2022, Gilbert had his fourth open-heart surgery. The surgeon was unable to cut the obstruction out and instead did the DKS (Damus-Kaye-Stansel) procedure in which he used a homograft to join his pulmonary artery to his aorta. The first extubation attempt caused him to have a seizure of unknown origin but he was successfully extubated the following morning. His head CT and EEG were normal thankfully.
Today, Gilbert is fully recovered and back to school, currently in the third grade at South Anna Elementary School in Montpelier, VA. There’s not much data to show how long the homograft will last but we’re hoping for a very long time.
Gilbert is also part of the CANDO (cardiac neurodevelopment outcome program) at Children’s National. He has an IEP at school as well. He has a speech impairment, and he receives speech therapy at school and a private facility. He also receives occupational therapy for his right side at school and at a private facility.
