A Texas Transplant Family is Grateful for Newborn Screening

September 2, 2025 — September is Newborn Screening Awareness Month, which is the month set aside to educate parents about the importance of this life-saving testing. Each year, about four million infants in the United States are screened for serious disorders present at birth. Of those four million, screening typically identifies more than 12,000 babies annually with a condition that, if left undiagnosed and untreated, would cause severe disability or death. A Texas family is extremely thankful their baby’s rare diagnosis was discovered during newborn screening.

Jean and Cameron Strother of Lindale, Texas, were very excited to learn they were pregnant with their first child. Jean had a normal pregnancy filled with anticipation and joy. Finley Laine Strother made his appearance on August 31, 2021. Jean and Cameron were instantly smitten with their baby boy and excited to take him home to start their new life together as a family of three. However, on September 4^th they received a phone call from the State of Texas informing them the baby’s Newborn Screening showed elevated amino acid levels that indicated he might have a rare genetic condition, but further testing was needed to confirm. At eight days old, Finley was taken, via helicopter, to Cook Children’s Hospital in Fort Worth because the baby had stopped eating and was inconsolable. They will never forget the importance of the newborn screening process that prepared them for the possibility that something might be wrong with their newborn son.

After multiple tests, the Strothers were told Finley had Maple Syrup Urine Disease (MSUD). They were also told if left untreated, MSUD can cause significant brain damage and even death. MSUD is a metabolic genetic disease that impacts the body’s ability to break down three of the main, required proteins. If they are not broken down, protein levels rise and create neurological issues. Finley is one of about 2,000 people in the United States with this diagnosis.

Finley spent three weeks in Cook Children’s NICU. Jean and Cameron watched their baby boy, “fight his way through more medical procedures than most adults will ever experience including intubation and mechanical ventilation, medically induced paralysis, dialysis and feeding tube placement.” After a three-week hospital stay, Finley was discharged to home. Mom and Dad had to quickly learn how to navigate his diagnosis and explore their treatment options, which included a lifelong, excessively strict diet and frequent lab draws … or a liver transplant.

The Strothers had their first appointment with the Metabolic Team at Children’s Medical Center Dallas on October 7, 2021. Jean remembers this date well, “We found out that our Metabolic Geneticist was 100% on board with our plan to pursue a liver transplant as Finley’s treatment option.” Once they started working with Finley’s team in Dallas, Jean and Cameron found the team of professionals to be passionate about managing  Finley’s rare diagnosis. “They navigated his fluctuating protein levels with ease, kept him stable for weeks at a time which is challenging with MSUD and were in complete agreement with us about seeking a liver transplant for Finley’s long-term quality of life,” Jean said.

Finley’s transplant evaluation at Children’s Medical Center Dallas started in late December 2021 and continued into early January 2022. Jean said, “We researched numerous transplant centers when we determined we wanted to pursue a liver transplant to avoid further MSUD complications. We already felt at home with our team at Children’s Medical Center Dallas, which was highly recommended by Finley’s metabolic medical team. It was very clear through the transplant evaluation process that Finley was not going to be just a patient; this team was invested in him, his health, his success and his life.

It was also during the family’s Children’s Medical Center Dallas transplant evaluation process when they were introduced to the Children’s Organ Transplant Association (COTA). On April 22, 2022, Jean sent a Get Started (COTAGetStarted.org) notification to the organization’s headquarters requesting more information. Three days later, COTA’s Family Outreach Specialist and Cameron had a detailed phone call about transplant-related expenses and the family’s situation. The family had good insurance, but were incurring regular co-pays, deductibles and insurance premium costs. They lived 115 miles from Children’s Medical Center Dallas and had recently learned their insurance policy had a $10,000 lifetime maximum travel benefit.

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; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.

On April 27, 2022, their signed agreement arrived at COTA’s Indiana headquarters, and the Strothers family officially became part of the COTA Family … and Finley became a COTA Kid.

“Once we signed up with COTA, we immediately felt welcomed and supported,” Jean said. “The staff provided in-depth training for our key volunteers and offered fundraising ideas and strategies. Then we received a personal phone call from COTA’s President Rick Lofgren who told us stories about other liver transplant families and their successes. He was proud to share the organization’s focal points … a successful transplant for the patient and a team of volunteers who are trained to successfully raise funds for transplant-related expenses.”

COTA in honor of Finley Strong was launched, and the website was immediately available for online donations. The team quickly got to work and in a short amount of time raised nearly $63,000 for COTA to assist with transplant-related expenses. Jean and Cameron were overwhelmed and deeply grateful for this outpouring of love and support.

On January 9, 2023, 13 days after Finley’s one-year UNOS (United Network for Organ Sharing) status was renewed, Jean received the call that a perfect liver match had been found. She remembers, “The rush of emotions that came with that call will never be forgotten. We packed like a tornado was about to hit our home, gathering every little thing we could possibly need before making the two-hour drive to Children’s Medical Center Dallas. We also poured his ‘24-hour batch’ of special MSUD formula down the sink because we would not need that any longer! The night was filled with excitement, anxiety and less than adequate sleep with 5:00 am surgery prep and transplant scheduled for 7:30 am January 10^th.”

“As we walked with the team down to pre-op that morning, there was a sense of peace. Every member of Fin’s surgical team seemed so secure in their ability to care for him. He was in the best hands,” she said. After the transplant concluded, Jean and Cameron were told the donor liver fit perfectly. They spent 10 days inpatient and were then discharged to the Ronald McDonald House in Dallas where they lived for the next four weeks. On February 18, 2023, the Strother Family was able to return home to Lindale, Texas.

“During our inpatient stays with Finley, which were more frequent than we had anticipated, we had absolutely no fear taking time off from work, covering steep hospital expenses or paying for costly medications,” Jean explained. “COTA had already provided us the direct links and paperwork needed for expense submission, and billing information to get transplant-related expenses covered in a timely manner. COTA’s staff was always more than available when we had questions or needed assistance while we were living at the transplant center.”

The family has had some post-transplant bumps in the road, including a rejection episode and an issue with his G-tube that required multiple hospitalizations and ultimately its removal once it was determined Finley could take his post-transplant medications by mouth. By Christmas Eve 2023, he was finally weaned off most of his medications, which was one of the greatest gifts they received that year. The family celebrated the arrival of 2024 by celebrating Finley’s One-Year Transplantiversary on January 10^th.

“We spent the first months of 2024 getting back to our regularly scheduled programming,” Jean said with a chuckle. “We are learning to navigate a life that is a little less sheltered than the initial first year post-transplant. He can now enjoy trips to the grocery store, play dates with his cousins and children’s church. Since transplant, Fin has been able to explore a whole new world of foods, especially protein rich ones.”

She continued, “We have also witnessed a huge improvement in his overall development. Living with MSUD had him in a brain fog. His speech and language have flourished and his desire for eating improved drastically. He amazes us every day with how intelligent and creative he is. He’s truly the most amazing little boy, and we are so encouraged by the changes we are witnessing in him … thanks to his new liver.”