Though Eli Clark was born seven-and-a-half weeks earlier than he was expected, his parents, Dr. Trey Clark and Stephanie Clark, took him home from the Neonatal Intensive Care Unit at the Medical University of South Carolina with no perceived issues. Yes, the child seemed a bit attached to his mother, but Stephanie attributed this to him being their second son, a birth order quirk her mom friends agreed was typical. Eli’s delayed speech, too, seemed little cause for concern at first, as his brother Gabe had gone through the same thing — though the family eventually decided to move forward with speech therapy. Then, when Eli was 4 1/2, his pediatric nurse hypothesized he had a heart murmur. Hearing this, Stephanie looked back and asked herself whether her son could have been born with one; she didn’t think so. Furthermore, the following test results all looked satisfactory.
“They did an EKG, and things looked fine,” Stephanie said. “There was nothing indicating a murmur; his vital signs were stable.”
That December, however, Eli came down with the flu — and his illness dragged on. The family took a trip to Disney World to celebrate the New Year, Stephanie remembered, and Eli still had not recovered at that point. Furthermore, she noticed her son was not putting on weight like she thought he should for his age, and he appeared pale, tired and unwell in general. Upon a doctor’s visit, however, the pediatric nurse saw no cause for Stephanie’s concern. Instead, she said Eli was pale “because he was a redhead” and petite because of family height genetics. A nurse herself, Stephanie admitted she did not want to be one of those pushy “nurse moms” — she wanted to trust in Eli’s care team. But the gnawing feeling persisted in her gut.
“Life was busy then, too,” she noted. “We had two kids in school, me working at night, my husband working in his practice, moving again — it was insane. At the time, we lived in Pawleys Island, not Charleston, and we had no family near us.”
One Friday morning, after a few harrowing days of working with very little sleep, Stephanie had no choice but to rush Eli to the emergency room — he had vomited upon waking up and “it didn’t look normal,” she said. Stephanie phoned her parents, who readily met her and took big brother Gabe into their care. At the hospital, the first remark doctors made was that Eli indeed looked far too pale. A short while later, holding her son protectively in her arms, Stephanie learned the truth: Eli was in severe renal failure and would need to fight to survive.
“His body was filtering nothing,” she said. “His hemoglobin was at 3.6. His kidneys were not making hormones; his bone marrow was not creating red blood cells. To this day, he is the sickest patient to present in that emergency room with renal failure. Dr. Katherine Twombley said she had never seen a child so sick.”
There was no time to process the trauma, however — every moment mattered if Eli was to survive. The ER team would give him blood “to beef him up,” hoping to safely dialyze him without instigating a seizure. There was a strong possibility the child wouldn’t make it through the night.
“I remember the looks on people’s faces,” Stephanie said. “There is no description of what my emotional feelings were. Being in shock. Exhausted.”
Mercifully, Eli survived that first evening, and for the next six months underwent dialysis. Stephanie described the process of giving her own child injections as “surviving without processing,” working weekends and day shifts so she could be at his side while her husband continued practicing medicine. Finally, Eli was matched with a kidney — Stephanie’s own — and the transplant was performed in August 2014. Because the child was so tiny, doctors had to remove his kidney to make enough room for the transplant. A week after the operation was performed — the Clarks stayed with family in Charleston — Dr. Twombley sent them back home to Pawleys Island.
“We had to stay a week for labs, then Dr. Kathy let us go home,” Stephanie said. “She was comfortable with that, knowing me. We had to come back twice a week for labs, then it changed to once a week, then once a month, then once every three months. I returned to work about six weeks after the transplant.”
By then, a move down Highway 17 to Mount Pleasant was underway, and Stephanie had taken a job with MUSC, commuting with the help of her nanny — a retired nurse — to care for Eli and Gabe. By the middle of 2015, the family’s move was complete, and the Clarks had moved to the Charleston area full time.
“It was perfect timing,” Stephanie said. “Eli did really well in the beginning. Then, in June 2017, he developed a rare complication to his transplant.”
To read the rest of Eli Clark’s amazing journey, stay tuned for Part 2 in the March/April issue of HealthLinks Charleston.
by Denise K. James