Newry, Northern Ireland — A three-year-old girl is preparing for her second organ transplant, a testament to the resilience of children facing incredibly rare medical challenges and the life-saving power of donation. Etta Cartmill’s story, unfolding in Northern Ireland, highlights the complexities of a genetic condition that has already required a liver transplant and now necessitates a kidney.
Rare Genetic Condition Requires Multiple Transplants
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Etta Cartmill, 3, is battling a rare genetic disorder and awaiting a kidney transplant after already receiving a life-saving liver.
- Etta Cartmill and her brother Olly, 6, were both born with TTC21B, a condition affecting the kidneys and other organs.
- Etta received a liver transplant after developing portal hypertension, significantly improving her quality of life.
- She now requires a kidney transplant and her mother, Dionne, is planning to donate one to her.
- Organ donation is credited with giving both children a future.
Etta Cartmill, along with her older brother Olly, 6, was diagnosed with TTC21B, an extremely rare genetic condition. This condition primarily impacts the kidneys but can affect other organs as well. Both children were born with stage 5 kidney failure, requiring intensive medical intervention from birth.
A Brother’s Transplant and a Mother’s Hope
Olly underwent home-based dialysis for two and a half years, managed with a complex regimen of medication and a feeding tube to regulate electrolytes. His mother, Dionne Cartmill, 41, described their home as resembling a hospital during that time. Fortunately, Olly received a kidney transplant from his grandmother, a procedure Dionne called “life-changing.”
“He has finally become the wee boy he should have always been. He is full of… fun and keeps us on our toes,” Dionne shared.
What happens when a child needs multiple organ transplants? Children with rare genetic conditions like TTC21B can experience failure in multiple organs, requiring a series of transplants to survive and thrive. The success of each transplant depends on finding suitable donors and managing the complex post-operative care.
Dionne Cartmill
Olly Cartmill
Etta’s Complex Journey
Etta’s case proved more challenging. Her hemoglobin levels were consistently dropping, necessitating regular blood transfusions every four to six weeks. Tests at Birmingham Hospital revealed a large and scarred liver, leading to a diagnosis of portal hypertension and the need for a liver transplant.
Etta received a new liver from an organ donor, and Dionne reports a dramatic improvement in her daughter’s condition. Before the transplant, Etta was in constant pain, cried frequently, and appeared agitated with a yellowish-gray complexion. Her enlarged liver caused chronic constipation and a lack of energy.
Dionne Cartmill
Etta Cartmill
“Now she is thriving,” Dionne said. “Absolutely loves music and dancing, loves getting out for walks in the pram, getting her hair done, going shopping and of course watching Peppa Pig.”
Looking Ahead: A Mother’s Gift
Despite the success of the liver transplant, Etta still requires a kidney transplant. She currently undergoes in-hospital dialysis three to five times a week and takes numerous medications, along with receiving physical therapy.
Dionne is preparing to donate a kidney to Etta, feeling optimistic after her daughter’s positive response to the liver transplant. The liver transplant itself took 11 hours, with Etta spending just under five weeks in the hospital. Dionne anticipates the kidney transplant will be less complex.
Dionne Cartmill
Etta Cartmill
“I don’t have any concerns about donating one of my own organs,” Dionne stated, “I will still be able to live a full, healthy life with one kidney.”
Dionne emphasized the importance of discussing organ donation with family members, calling it “giving someone the absolute gift of life.” She expressed gratitude to the anonymous family who donated the liver that saved Etta’s life, saying, “You saved Etta’s wee life and we will always be so thankful.”
“For me, I am just buzzing that I can do this for Etta and give her the full life she truly deserves,” she added.
