Accepting memorial contributions.
Little Stephen started his heart journey when his mommy was only 25 weeks pregnant. Stephen was a stubborn little guy and was doing a really good job hiding from the ultrasound tech during his anatomy scan, but despite his greatest efforts, the ultrasound found something off with his heart. Stephen had a rare heart condition known as HLHS or Hypoplastic Left Heart Syndrome. This essentially means that the left side of Stephen’s heart did not grow as it should have. Stephen’s mommy and daddy made the long trek to Vanderbilt Children’s Hospital so that when it was time for little man to come into the world, he had all the help and care that he would need. Mr. Stephen was born on November 8th, 2021. He spent the first week of life in the NICU getting all the love and attention from staff and family. Stephen had his first heart surgery called the Norwood procedure just one week after birth. Stephen did well with this procedure and was able to go home 77 days after he was born. Stephen spent lots of time with mom and dad and got to hang out will all his cool grandparents, aunts, uncles, and friends. A short month later, Stephen found himself back at the hospital getting a heart cath to determine if he needed the second procedure, the Glenn. Stephen had the Glenn procedure that following week to improve the function of his heart and he was able to go home just 20 days later. Unfortunately, on June 1st, 2022, Stephen was admitted to the local children’s hospital for a respiratory infection. This infection took a toll on little man’s body, so he was taken to Vanderbilt by ambulance on June 3rd, 2022. Mr. Stephen has been in the hospital ever since. The respiratory infection did not treat little Stephen well and made his heart function decline. They decided that Stephen needed to be placed on the heart transplant list in September 2022. Stephen continued to decline, and his little heart couldn’t keep up, so Stephen went back to the OR on his first birthday to undergo a V.A.D placement. This is a Ventricular Assistive Device, and it helps the heart pump outside of the body. This was a very risky procedure as babies with the Glenn usually do not perform well with a V.A.D, but Mr. Stephen proved everyone wrong and did amazing. At the end of April 2023, Stephen’s mommy and daddy got the call that there was a heart on the way for Stephen. On April 29th, 2023, Stephen underwent a 16-hour long heart transplant. Mr. Stephen has been fighting his hardest every day since then. Stephen has had a tough time getting off the ventilator as his lungs have been giving him a hard time. He has been experiencing some delirium, which makes it hard for him to look around and interact with people. From a deflated lung to pneumonia, Stephen has been working had to get off the ventilator so he can finally play with Mommy and Daddy again. However, late June 2023, Stephen underwent another heart cath to determine the function of his new heart. During that cath, they discovered a clot and decreased heart function. They were able to remove the clot and they did a biopsy of Stephen’s heart. This all means that Mr. Stephen could be in heart rejection. At this time, we are still awaiting results of the biopsy that will give us a definite answer. Until then, Stephen is still intubated and is being treated for rejection just in case.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.