Bloomington, Indiana – December 5, 2016 – For many December is the month to focus on gifts, those boxed and wrapped in shiny paper and beautiful bows. For one former California, and now Pennsylvania family, December is the month to celebrate the ultimate gift — the gift of life. A gift this Children’s Organ Transplant Association (COTA) family has received once, and is waiting to receive again.
Rosalina ‘Rosie’ Vargas was born in December 2013 to her adoring first-time parents, Sarah and Tony. Sarah experienced an easy pregnancy and fast delivery. It was every new mother’s dream. Sarah and Tony took their bundle of joy home on New Year’s Eve and the new family rang in the New Year snuggled in bed in their California home. According to Sarah, “Our happy, new family was complete.”
A few days later the young family’s world changed forever. On January 2nd, Rosie’s newborn screening came back positive for Maple Syrup Urine Disease (MSUD). MSUD is a rare, inherited metabolic disorder that causes the body not to be able to break down certain amino acids. Individuals who have the disease produce urine with a distinctive maple syrup odor. The odds of this diagnosis are 1 in 200,000. When Rosie was only seven days old she became quite lethargic and her parents rushed her to the hospital. She was admitted to the pediatric ICU (PICU), and her parents were told her brain was swollen from elevated leucine levels attributable to MSUD. The hospital medical team quickly performed two rounds of dialysis on the tiny infant in an effort to lower the leucine levels and avoid brain damage.
Unfortunately, the dialysis catheter was placed incorrectly and when Rosie began dialysis treatment she lost half her blood volume. Eventually the infant went into full arrest; Sarah and Tony stood helplessly at her bedside watching their baby girl slip away. But the couple learned very quickly Rosie is a fighter. In that hospital room, Sarah and Tony vowed they would do whatever was needed to make Rosie healthy and happy.
The Vargas family soon learned that MSUD would be a lifelong battle. Even a simple cold could cause another metabolic crisis for Rosie. After speaking with their medical team, Sarah and Tony decided that a liver transplant was the best option because it would make Rosie metabolically stable and she would no longer be at constant risk of brain damage. They also decided Rosie would have the best chance of long-term survival if they worked with the transplant team at Children’s Hospital of Pittsburgh. Sarah and Tony made their decision based on the fact that, at the time, the Children’s Hospital of Pittsburgh had performed more than 1,300 pediatric transplants with more than 50 of those being on children diagnosed with MSUD.
Once the decision was made to travel across the country for Rosie’s transplant, Sarah and Tony knew they were going to need a lot of assistance and financial support. After researching potential organizations that might be able to provide fundraising assistance, Sarah placed a call to the Children’s Organ Transplant Association (COTA).
COTA uniquely understands that parents who have a child or young adult facing 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. A COTA fundraising specialist traveled to their California hometown on June 14, 2014, to conduct an on-site training with a group of volunteers. The COTA in honor of Rosalina V team of volunteers quickly started organizing fundraisers for transplant-related expenses. Within a few weeks after the team’s COTA training, Rosie and her parents headed to Pittsburgh for her transplant evaluation.
On June 24th Rosie was officially listed for a liver transplant with the Children’s Hospital of Pittsburgh. Tony’s cousin offered to undergo genetic testing to be Rosie’s liver donor. On September 2nd Tony and Sarah were overwhelmed with joy when they heard Tony’s cousin was indeed able to be Rosie’s living donor.
Rosie received her new liver on October 2, 2014. However, she experienced a serious complication when her hepatic artery clotted after the surgery. During her first four days post transplant, Rosie underwent three separate surgeries. Rosie spent 11 days in the PICU and became physically addicted to morphine. Sarah and Tony watched their nine-month-old daughter go through withdrawal and spend three weeks on methadone. The baby eventually recovered and the Vargas family was able to return to California to consider their ‘next steps’ with Rosie’s cross-country medical treatments and disease management.
“Rosie’s transplant journey to date would not have been possible without COTA. Her transplant team was on the opposite coast from our home and we had to coordinate how we would list her for transplant, and then live across the country during the transplant and recovery. We had lost wages and living expenses to cover in addition to all of the medical costs. COTA helped us see the love that surrounded us during a very dark time. COTA continues to give us so much hope,” said Sarah and Tony.
Despite the rough road Rosie has faced she is a happy and well-adjusted child. Today Rosie is walking and she has hit every developmental milestone to date. She loves to eat all food, which was one of her mother’s pre-transplant hopes for Rosie. The toddler was able to eat birthday cake to celebrate her first birthday. According to Sarah, “Rosie has a magical ability to make everyone who meets her fall in love with her. She is sweet and outgoing. She engages with strangers and has a bright beaming smile. People who don’t know her story would never guess she has been through so much, and that her life was almost lost when she was 11 days old. She is our miracle. She has renewed our faith in humanity as we continue to witness the outpouring of love and support from our community and family.”
This Christmas may hold some unknowns for the Vargas family who have permanently relocated to Pittsburgh to be closer to Rosie’s medical team. As long as they are together this family is confident they can tackle whatever comes next in Rosie’s journey. Rosie is a gift for Sarah and Tony, parents who went from praying their baby would live just one more day, to now making plans for her future.
For more information about the Children’s Organ Transplant Association (COTA),or to find a COTA family in your area, please email gro.a1519203218toc@m1519203218ik1519203218.