Gavin Morgan

Heather and Wade Morgan from Katy, TX, were expecting a bit of a challenge with the arrival of their second child. Doctors had informed them of a hole in the infant’s heart while he was still in utero. It posed a problem that could be dealt with, so the couple anticipated their baby’s arrival with both joy and apprehension.

Little Gavin was born looking like the picture of health; however the family received a new diagnosis upon his birth examination – what had been thought to be a hole in the little boy’s heart was, in actuality, an aneurism. Gavin was kept in Texas Children’s Hospital in Houston for a week of observation and there was nothing to indicate complications. He seemed to be functioning well.  Doctors determined Gavin had a condition in which a large VSD (Ventricular Septal Defect) became an aneurism. 

Gavin was released to go home after the week of observation.  When he was around the age of six weeks Heather and Wade took Gavin back to hospital because he was exhibiting signs of distress.  Cardiologists then determined the aneurism was only a symptom, that Gavin actually had cardiomyapothy, a chronic disease of the heart muscle, in which the muscle is abnormally enlarged or thickened. “All the doctors have been amazing and so on top of Gavin’s situation,” said Heather.  “They were really amazing and wonderful.” 

It was the beginning of a very long saga for the little family from Katy, TX. The best course of treatment: a new heart. Gavin was ranked A1 on the transplant list and remained in the hospital for the next five months. Doctors ordered a mechanical Berlin Heart as a backup, in the event Gavin should need it for survival until a human heart could be found.  The Morgans prayed. “Faith and prayer got us through this experience – it literally brought us to our knees.  We begged God for a second chance for our little guy.”  

It was agony for Heather, who was not able to hold her baby for a total of three months.  Gavin’s situation was grave, touch-and-go every day.  Heather stayed in hospital for two months while Wade traveled between home and hospital, and 3-year-old big sister Lauren stayed with her grandmother.  The Morgans struggled with their separated family, the anxiety over a desperately ill child, and the mounting medical bills.

Gavin was in a heavily sedated state in ICU for two months while waiting for a heart. After two months his doctors decided Gavin needed the assistance of the Berlin Heart; he could no longer wait for a donor heart.  Preparations began, but five hours before the Berlin Heart surgery the family was notified that a donor heart had been found.  Heather expressed gratitude for Gavin’s donor family.  She cannot fathom how a family could be so generous and give the gift of life to another baby on the worst day of their lives. “Each day we have with Gavin is such a blessing,” says Heather.

The transplant was a success and Gavin stayed in ICU for another four weeks.  It seemed the Morgans would be able to relax just a little and begin to enjoy their little boy. He returned home with them, and although he had to be hospitalized yearly for different infections and illnesses, he thrived. He got to become big brother to Madeline when he was 3 years old.

However, Gavin now faces PTLD, or Post-transplant Lymphoma Disorder, a B cell proliferation due to the immunosuppressant medicine he must take to keep his body from rejecting the donor heart.

Gavin had to undergo an intense regime of IV infusion medicine, much like chemotherapy.  Halfway through his levels were so good he was able to stop receiving treatment. Although Gavin responded to treatment he must avoid situations in which he may be exposed to germs because his immune system is compromised. Heather says it is very hard to keep the family so isolated.  She knows one day they will get back into their normal routine but for now they spend most of their time at home or the hospital.  Heather says, “He is missing his friends and bowling.  He loves bowling!”  She herself has learned to just enjoy the moment and appreciate the blessings she has.

 Alison Harter, the Cardiology Social Worker at Texas Children’s Hospital in Houston helped the Morgans connect with the Erika Kate Foundation following the PTLD diagnosis.  With insurance premiums almost as much as their mortgage payment, they were struggling financially.  Parking, tolls, gas, co-pays, medicine, and childcare for other children all added up and made it difficult to make ends meet.  The Morgans made just enough money that they are disqualified from receiving any kind of financial assistance but not enough to pay all the bills.  Heather says EKF has been such a blessing and helped ease some of the financial strain.

Gavin continues to see his oncology and transplant doctors 3 or 4 times a week but is no longer receiving PTLD treatments. As a typical 5-year-old, his response to going to doctor visits is usually, “No way….do we have to go, Mom?!” But chances are, there will appear a grin, that miracle smile of the little boy who made it.