Everett Gray celebrated his sixth birthday a few months ago. While a birthday celebration for a six-year-old boy is almost always a big deal, Everett’s birthday was monumental.
Before Everett was even born six years ago, a prenatal pregnancy scan showed Everett had a severe congenital heart defect. He was diagnosed with Hypoplastic Left Heart Syndrome, a condition that means that as the baby develops during pregnancy, the left side of the heart does not form correctly.
According to William T. Mahle, MD, Chief, Children’s Healthcare of Atlanta Sibley Heart Center, Marcus Professor of Pediatric Cardiology Director, Division of Pediatric Cardiology Department of Pediatrics Emory University School of Medicine, Everett’s condition is fairly rare.
He says, “Each year just about 1,000 children are born with hypoplastic left heart syndrome.”
He adds that at Children’s Healthcare of Atlanta, they average fifteen pediatric heart transplants per year and follow over 130 children who’ve received a heart transplant.
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Everett’s parents, Jeremy and Kelley Gray were told that this rare diagnosis meant that Everett would not survive without surgery and their family might not have the chance to celebrate many birthdays at all.
Everett made his entry into this word five weeks early and he was immediately transferred to Children’s Healthcare of Atlanta at Egleston where his first open heart surgery was performed when he was but two days old.
Everett underwent a second open heart surgery at almost five months old. After this surgery, baby Everett started to grow and develop but the Gray family knew that at some point, a heart transplant was in Everett’s future.
In March 2013, Everett suffered a setback and was hospitalized for three weeks.
Then, in March 2015 Everett woke up one night struggling to breathe and after many tests at Egleston, the Grays were told that Everett was in severe heart failure. On April 3rd, it became a certainty that Everett’s heart would not recover and he was put on the heart transplant list at 1A…the highest priority.
“The miracle of heart transplantation never ceases to amaze even the most experienced nurses and physicians. Everett was so weak and debilitated before surgery. The new heart transformed this charming child, providing him with vitality and strength,” Dr. Mahle, seen here with Everett.
(For the AJC)
The Grays had hoped that Everett’s heart transplant would not be necessary for at least ten to fifteen years, but “Braveheart” Everett (the name of his Facebook page) was admitted to CICU to await a new heart at the tender age of five.
After weeks and weeks in the cardiac unit, a new heart was finally found.
The procedure went extremely well and five days post-transplant, Everett was discharged to go home where he did what any five year old boy would do…he headed in to play with his toy trains, had pizza for dinner and then went to sleep in his own bed.
This is an emotional story about a beautiful little boy. And it has a happy ending because numerous people from two organizations worked hand-in-hand with the Gray family to ensure Everett would celebrate his future birthdays.
Dr. Mahle says, “The miracle of heart transplantation never ceases to amaze even the most experienced nurses and physicians. Everett was so weak and debilitated before surgery. The new heart transformed this charming child, providing him with vitality and strength.”
Everett’s father, Jeremy Gray says, “Everett has received care at CHOA from the day he was born and we are incredibly grateful for the skill and expertise of his CHOA doctors and nurses who have literally saved Everett’s life multiple times. Everyone at CHOA, from the medical professionals to the custodians, maintenance workers, and cafeteria staff, go out of their way to care for the patients and their families.”
During Everett’s stay in CICU, the Grays welcomed their second child into the world at their “second home” at Egleston.
Gray recalls, “Everett was in the Cardiac ICU at Egleston for 71 days while he waited for a matching heart and during that time, while my wife and I lived at Egleston with him, his little sister was born. She spent her first weeks with us in Everett’s hospital room.”
And while Egleston became a second home at times for the Gray family, staff members became like second family.
Gray says that the nurses not only spent time with Everett, but with the whole family. There are two nurses in particular, Brenda Jarvis and Katie Welborn, that are now close friends of the Gray family.
Gray says, “When we got the call that a matching heart had been found for Everett, it was Brenda’s first day back from a trip overseas. We were so happy she was there for that important day in Everett’s life and was the one to prepare him for surgery. Katie was off work, but got the news and couldn’t help but come in anyway to share in the anticipation and to spend the morning visiting with Everett.”
The Children’s Organ Transplant Association (COTA) is also integral to the success of Everett’s journey.
While the Gray family waited on a new heart, a transplant social worker gave Jeremy and Kelley information about COTA as a resource for helping to cover the cost of Everett’s care.
While the Gray family has insurance, the cost of a transplant and the aftercare is astronomical and there are often gaps in what insurance will pay and what is necessary to cover the cost of care.
According to a statement issued by COTA, here are some of the statistics about Everett’s heart transplant and the related costs.
- The average cost of a heart transplant in the United States is more than $900,000.
- The immunosuppressant drugs required after transplant cost thousands of dollars per month. The effectiveness of these medications is determined through blood tests. Everett will have blood drawn every eight weeks as long as levels are stable, and more frequently after dosage adjustments. Some post-transplant medications are particularly hard on the gall bladder and kidneys so gallstones and kidney failure are not uncommon in the years following transplant.
- To check for rejection, Everett will have regular heart biopsies, which are performed under general anesthesia in the cardiac cath lab. In addition to multiple biopsies he will have annual cardiac angiograms and echocardiograms.
- Without incredible medical advances, Everett will eventually require another transplant. The average lifespan of a heart transplanted at Everett’s age is 14 years.
Jeremy says that working with COTA has been a surprisingly easy and rewarding experience.
“We had an intake conference call with some of COTA’s staff who were patient, understanding, and kind. It was clear from the beginning that COTA wanted to be able to help.”
“COTA understands the reality that the parents of a child in the hospital waiting for a transplant have too many other things to worry about in the moment, so the fund raising effort is spearheaded by a team made up of family friends. We talked with a few friends and extended family members and asked if they would serve on our team, but once we gave COTA their names and contact information, they ran with it.
COTA sent a staff member to Atlanta to meet with the Gray’s fund raising team for training and organization. As a result of the training, Jeremy says that the team has really taken off and excelled at fund raising efforts.
Jeremy adds, “The funds are raised for COTA in Everett’s honor. When we have specific transplant related expenses, we can submit an application to COTA to have them reimbursed. We can request funds at any time - even far into the future, which was important to us. On average, a pediatric heart transplant lasts around 14 years before a second transplant is needed. And 1 in 4 pediatric heart transplant recipients will need a second heart transplant within 5 years. So we know that Everett’s future likely holds more major transplant expenses, and our fund raising with COTA helps us feel prepared for those looming financial burdens.”
In addition to his birthday, Everett is celebrating being one year post-transplant and his latest tests reveal there is no rejection.
This is great news for a little boy who is already planning his future.
The lively kindergarten student wants to be a train engineer AND a kindergarten teacher when he grows up and thanks to the scores of people at COTA and CHOA, who helped facilitate this miracle…anything is possible for this young boy.