Gabe’s Heart Journey

About this campaign

Gabe was born in November with Hypoplastic Left Heart Syndrome, which basically means that the left side of his heart is not big enough to work effectively. He had his first open heart surgery when he was only 5 days old. He spent the next 6 weeks in the hospital. During that time he had an additional surgery on his diaphragm and an injection to support his paralyzed vocal cord.

After only two weeks at home, Gabe was back in the hospital for low oxygen saturation. A week later he was back home with the support of oxygen.

He did well at home for 5 weeks before he again struggled with low oxygen levels, even with the support of home oxygen. He was admitted again to the hospital and an ECHO showed a narrowing in his arch. His team was able to successfully place a stent in to open up his arch. Although the stent helped to increase his blood flow, his AV valve became more leaky and did not bounce back like everyone had hoped. Because of this, he was no longer a candidate for the second heart surgery for single ventricle hearts (Glenn). We started the process for heart transplant.

God is a God of miracles and Gabe turned the corner shortly after. With this improvement, the team felt that Gabe could again qualify for the Glenn with some additional work to repair/support his AV valve. Three weeks after coming back to the hospital and just after he was 4 months old, Gabe had his second open heart surgery. The team was happy with how surgery went. His recover after, however, was not smooth. He struggled with low oxygen levels, high pressures, low heart rates, and poor rhythm. This prompted the team to use the temporary pacemaker. As the week progresses, Gabe's heart was not making the improvements we all were hoping for. An echo showed a significant decline in the function of the right side of his heart. With the poor function and need for a permanent pacemaker, Gabe no longer qualifies for the third surgery for single ventricle hearts (Fontan).

On March 28, Gabe was listed for a heart transplant. Since then, he has been at the hospital working to find the right combination of medications that support his heart, but also agree with his kidneys, with the goal of going home. The first attempt to come off of his iv heart med was unsuccessful. With that disheartening news, we prepared to spend the next year or more in the hospital preparing his body to be in the best position to have a successful heart transplant when his is matched with a heart.

But God flexed again and Gabe's most recent echo showed improvement in his heart function!! The team decided to try again to come off of his iv heart med. We are currently in the middle of weaning this medication. We don't know how it will turn out yet but we are confident in God's plan.

This journey has been 'stormy,' but we are coming out stronger on the other side. We have been blessed to have family, friends, and the staff at Children's come along beside us and be a part of our 'gang.' We would not be able to have the strength to get through this without that support.