This Month He Celebrates a Big Birthday Before Santa’s Arrival
December is the month when many focus on gifts. For a Georgia transplant family, December is the month to celebrate the ultimate gift — the gift of life. This family’s toddler will be celebrating his third birthday in a few days, thanks to receiving part of his mommy’s liver when he was just five months old. For the Melvilles it is a very different December than three years ago when this family received a devastating diagnosis about their newborn boy.
Elizabeth and Jonathan were thrilled to find out they were pregnant with their second child. Their firstborn, Nora, was very excited to meet her new little sister or brother. Elizabeth remembers his birth in early December 2017 like it was yesterday because she says Wesley came crashing into their world a week before his due date. He was indeed perfect to Elizabeth, Jonathan and Nora, but soon after his birth doctors became concerned there was something very wrong with the tiny baby. Almost from the day he was born, Wesley had jaundice that caused his body, and even the whites of his eye, to be yellow. The baby also had a swollen belly from backed up fluids within his little torso.
At only three weeks old, Wesley was diagnosed with Biliary Atresia during a liver biopsy. Biliary Atresia (BA) is a childhood disease of the liver in which one or more bile ducts are abnormally narrow, blocked or absent. This means that bile does not leave the body as it should which causes further damage to the liver and issues with growth and nutrition. As a birth defect in newborn infants, Biliary Atresia has an incidence of one in 10,000-15,000 live births in the United States.
Elizabeth and Jonathan were stunned. “Our son underwent his first major surgery called the Kasai procedure at only three weeks old. Before he had even stubbed his toe we had to hand him over to a team of surgeons who removed his malformed gall bladder, cut into the bottom of his liver and attached his bile ducts to his small intestine to create drainage in the rare hope that it might save his liver,” Elizabeth remembers.
After this procedure, Wesley was released from the hospital and the Melville ‘Family of Four’ were able to all be at home together while he recovered. Elizabeth returned to work and the children went to daycare. But just as they were settling into their ‘new normal’ Wesley’s three-month checkup resulted in devastating news — the pediatrician could feel that his liver was hardening and she told Elizabeth and Jonathan the baby would likely need a liver transplant prior to his second birthday.
“This was one of the hardest parts of our journey,” Elizabeth said. “Very quickly we were witnessing with horror our baby’s waning health. Every day he grew more yellow. A couple of times we would need to have fluid drained off his swollen belly for his comfort.”
Upon hearing the news that a life-saving liver transplant needed to happen sooner than later, Elizabeth called the Children’s Organ Transplant Association (COTA). A COTA family Elizabeth had encountered sometime earlier in their journey had suggested she do so as a way to eliminate one major stressor — the myriad of costs associated with a transplant. On April 6, 2018, Elizabeth was able to speak to a COTA representative who answered her many questions about the organization and the necessary next steps. Three days later Elizabeth completed and returned COTA’s Patient Agreement and Wesley officially became part of the COTA Family.
COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so all contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses.
Wesley was admitted to Children’s Healthcare of Atlanta at Egleston on April 15, 2018, and was officially listed for a liver transplant on April 23rd. Also on April 23rd a COTA fundraising specialist trained the volunteers for the COTA campaign in honor of Team Wesley M. This group of family members and friends quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
No one ever knows how long a transplant-needy child or young adult will have to wait for ‘the call’ that the necessary organ has been found. Knowing she and Wesley shared the same blood type, Elizabeth decided to undergo extensive testing to see if she could possibly donate a portion of her liver to her baby boy. She did not want to see him suffer one more minute than necessary. She was also watching Wesley’s condition rob the joy from their family while witnessing Wesley smile less and less.
On April 19th Elizabeth blogged on the fundraising website provided by COTA: “Today I submitted my application to Emory University Hospital to become Wesley’s living donor. Even if we end up preferring a cadaver liver at least we will have a Plan B. But I have a feeling I will be a match and I would love to be my son’s Plan A.”
On April 29th she updated: “Our family is truly humbled and grateful for the outpouring of community support we have received during this difficult season. When you have a sick baby it is such a relief not to need to worry about money in the short term.”
On May 4th she posted the good news: “I finally got the call. I am going to be the fifth mom to do this here in Atlanta since January when they relaunched this program after abandoning it for years. On transplant day I report to Emory at 6:30 am and my surgery begins at 8:30. Around lunchtime they will run my liver through the Emory tunnel to Egleston in a cooler and Wesley’s transplant surgery will begin. It will be six to eight hours long. Now, let’s get this show on the road!”
On May 10, 2018, a portion of Elizabeth’s liver was transplanted into Wesley. Two days after that Elizabeth celebrated her birthday inpatient at Emory knowing the worst part of the journey was behind them. The day after that was Mother’s Day — appropriately the day Elizabeth got to see her sweet Wesley for the first time since their surgeries. Following the transplant, Wesley had two emergency bowel resection surgeries before finally starting down the road to recovery.
Elizabeth blogged on May 28th: “I am so grateful. I will start there. One should always start there. I was a match for my son and he survived a liver transplant and two bowel resection surgeries. Everything has been worth it to see him pink up, to watch his eyes get white and to see my liver working perfectly in him. Here’s to a future of more kisses than pokes and more days at home than in the hospital.”
Wesley was released from Egleston on June 1, 2018, and the Melville ‘Family of Four’ was once again together and under the same roof. Elizabeth remembers how it felt to bring their son home cured of Biliary Atresia. The family also brought home at least eight different medications for Wesley. He also had to return to Egleston three times a week for some time after his living donor transplant and there will always be regular check-ups in the family’s future.
During this month of gifts, gratitude, joy and major transplant milestones for the Melvilles, Elizabeth shared these thoughts about COTA. “The staff at COTA has been incredibly caring and helpful. During my very first conversation with a COTA staff member I was met with such compassion that I broke down in tears. Wesley’s diagnosis was a lot for us to digest. I was trying my hardest to be strong for my family and do what needed to be done to protect our livelihood and our hearts. In the midst of this, I immediately realized COTA was on our side.”
She continued, “We reached out to the Children’s Organ Transplant Association (COTA) prior to Wesley being officially listed for a new liver because a COTA family highly recommended we do so. COTA’s staff members were able talk us through, step-by-step, what needed to be done to find volunteers who would raise funds and how to access funds for transplant-related expenses. COTA was going to fight for us and help us by doing the heavy lifting so we could simply be there to comfort our baby boy. We struggle to even put into words ‘the gift’ COTA is to our family and will continue to be … for a lifetime.”
Wesley turns three this month and he is a boy on the go! He has recently started preschool and is having fun playing, learning, socializing and being a normal kid. These days Wesley’s labs are monitored every three months; transplant center visits have been reduced to once per year. Transplant has not slowed him down one bit. Wesley is off the growth charts and wearing size 5T clothing. He loves food, basketball and absolutely anything he can do outside.
This Christmas will likely be full of celebration and joy for the now 5 Melvilles as they enjoy the holidays in their own home. Wesley’s baby sister, Quinn Carmella, was born in December 2019 — which was the perfect bow to add to the beautiful package that is this COTA family. Elizabeth said, “There is nothing Wesley loves more than playing with his two sisters. Seeing their love for one another has made the trial we endured all the more worth it.”
For Elizabeth and Jonathan simply being able to enjoy the chaos of the holiday with three kids is the only gift they need under their family’s Christmas tree for many years to come.
For more information about the Children’s Organ Transplant Association (COTA), or to find a COTA family in your area, please email kim@cota.org.