Dylan, born 2012My husband and I found out at 20 weeks pregnant that our soon to be son would be born with HLHS. To say the news was devastating would be an understatement. Honestly, words canít describe the pain and heartache my husband and I were feeling. Luckily, we were set up with an amazing group of doctors right away: a pediatric cardiologist, a fetal specialist, a pediatric cardiothoracic surgeon, and several nurses that tied everyone together. We will forever refer to this group of people as ďThe Dream TeamĒ.
From the very beginning, all of our doctors were very optimistic, yet realistic at the same time. We were told that Dylan would receive three open heart surgeries all within the first three years of his life. We were told that Dylan had a 75% chance of surviving his first surgery and that we should be prepared for a roller coaster of complications and boy were they ever right. I think we hit just about every bump on that roller coaster possible!!
While in labor, Dylanís heart rate dropped and I had to have an emergency C-section. Hours later, Dylan had an echocardiogram and his doctor thought he saw more than just the HLHS. Dylan was emergently taken to Cardinal Glennon hospital where more specialized doctors could give an accurate diagnosis. We were told that if there was more damage than originally thought, that Dylan would not be a candidate for the 3 surgeries, but instead his only chance for survival would be a heart transplant. Twenty four long hours later, it was confirmed that Dylan did only have HLHS and that he was still a candidate for the planned surgeries.
At only seven days old Dylan had his first open heart surgery. The surgery itself went great, but shortly after he had several complications. A few hours after surgery Dylan cardiac arrested and was put on life support for 3 days. For the next few weeks we battled heart rhythm irregularities such as atrial flutter and tachycardia. Dylan was cardio averted and put on medications to maintain a normal rhythm. We were constantly taking two steps forward and then one step back. Once we got his heart under control, the next big hurdle was feeding.
Dylan literally didnít eat the first three weeks of his life, so an occupational therapist had to teach him. Once Dylan learned how to eat, the only thing keeping us in the hospital was the amount Dylan was eating. Instead of keeping us in the hospital for feeding, our doctors decided to give us specialized training, some fancy equipment, and a home nurse three days a week. On Dylanís 1 month birthday we finally got to take him home.
Dylan went home with an ng-tube for feeding, a heart and pulse oximeter, and 8 different medications. For the first two weeks home we had to feed Dylan 60ml of formula every 2 hours by bottle and what he didnít take, we had to put down his ng-tube. After two weeks, Dylan was able to finally take all 60ml by bottle and we could finally get rid of the tube! At 4 months old he had the second stage of his surgery and was home in six days! He had absolutely NO complications. Finally, at 6 months old he was off all monitors and all restrictions.
Since then, Dylan has been your typical lovable little guy. Other than his scar and 1 medication he takes a day, you would never know all this kid has been through. He is a running, talking, mischievous, and energetic little boy. We couldnít have asked for a sweeter or more precious child. Dylan sees his cardiologist every 6 months and it is anticipated he will have the third stage of his surgery at age 3.
FEB 2016 UPDATE:
In May 2015, just before Dylan turned 3 years old, he had his Fontan done. He was in the hospital for 10 days and was riding his bike 2 weeks later!
Dylan is now almost 4 years old and doing amazing. He attends preschool during the week and plays soccer every Saturday morning. He is developing on track with his peers and is full of energy. In the next year or two Dylan will have a catheterization done to close his fenestration. As far as we know, this is the LAST surgery/procedure in the foreseeable future.
Other than his scar, you would never know the journey our son has been on. He truly is the strongest & bravest kid I know. He's gone through more in his 4 years of life, than most people will in a lifetime. Through everything, I always remember, that God doesn't give you anything you can't handle and that what doesn't break you will only make you stronger.
Story by Dylanís mom, Jennifer Ė Missouri
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