October 1, 2019 -- October is Liver Awareness Month, which is the month touted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans have some form of liver disease. This October an Alabama transplant family is thrilled to be celebrating their son’s now healthy liver and his second chance at life.
Brigitte and Adam Ganucheau of Mobile, Alabama, who were parents of three boys, were excited to find out they were pregnant with their fourth child. Brigitte shares this memory, “Now when we tell others we have four sons including a set of twins, sometimes we hear, ‘Well after twins, I bet having another boy was easy!’ Then we tell Peter’s story.”
Peter Ganucheau was born in July 2016. The pregnancy and birth had no major issues. Brigitte and Adam were thrilled to bring him home and start their new life as a family of six. They did notice, however, that Peter was a little jaundiced but they thought it would clear up with some sunshine. At Peter’s two-month checkup the family’s pediatrician was concerned about his jaundice and distended stomach so she sent them to the University of South Alabama Children and Women’s Hospital for blood work. After multiple days of testing to rule out a number of possible causes for the jaundice and distended stomach, Peter was diagnosed with Biliary Atresia. Once his condition had a name, the situation became very real and frightening for this family. Biliary Atresia (BA) is a rare liver disease that impacts one in every 12,000 children. Children are born with this disease and doctors do not know, as of yet, what causes it to occur. In September 2016 Peter underwent the Kasai procedure, which is sometimes a ‘surgical fix’ for BA babies and a way to postpone a liver transplant. According to Brigitte, “Even though at first we were encouraged that our baby’s jaundice was slowly clearing up, it became apparent the surgery was not as successful as hoped. The reality was that a liver transplant was our only hope to save Peter’s life … and he would need a new liver very soon.”
In December 2016, Peter and Brigitte travelled nearly 550 miles to Children’s Healthcare of Atlanta at Egleston, which is a pediatric transplant center recommended by their pediatrician and approved by their insurance company. Dad and Ganucheau boys John Paul, Luke and Kolbe remained at home in Mobile. The top-notch pediatric team at Egleston performed numerous tests on the baby. After his initial evaluation was completed, Peter and Brigitte were able to return to Mobile to celebrate Christmas together; they felt truly blessed that Peter’s first Christmas was celebrated in their home with their family of six around the tree. Their time together was short lived when just a few days after Christmas Brigitte and Peter travelled to Atlanta for further testing. During his post-Christmas clinic visits it was determined the baby was too sick to return home and would need to stay in Atlanta until a new liver could be found.
Peter was officially listed for a new liver at the end of December 2016. It was decided Brigitte would remain in Atlanta while Adam and Peter’s brothers would stay at home in Mobile. Brigitte said, “It was a challenging time for our family and our marriage.” During these days, Brigitte journaled and shared the following with their friends and family, “The doctor has told us Peter is listed and eligible to receive a partial or whole liver. We are simply waiting for a match. Transplant can truly happen at any time. The surgery itself could take up to 10 hours and we are praying a match will present itself soon.”
The family relied on Face Time and text messaging to stay in touch, but Brigitte desperately wanted to be home in Mobile and to be ‘Mom’ to their four boys. Adam’s work in ministry was in a very busy time during January and February so he was struggling to keep his work, their home and the boys’ lives held together. With the help of supportive friends and family, Adam was able to make short visits to Atlanta.
It quickly became apparent to Adam and Brigitte that transplant-related expenses were going to be staggering, including the family’s travel expenses, Atlanta lodging and living expenses and Peter’s inpatient stay with no real idea of when a new liver would be available. A transplant social worker at Egleston suggested Brigitte reach out to the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses. Brigitte called COTA’s 800 number on January 3, 2017, and the next day returned the agreement to COTA’s Indiana headquarters, which meant the Ganucheau family was officially 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. On January 16, 2017, a COTA fundraising specialist trained the volunteers for the COTA campaign in honor of Team Peter G. COTA is a 501(c)3 charity so 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. This group of family members and friends, quickly got to work organizing fundraisers to help with mounting transplant-related expenses.
“Once the COTA fundraising began the overwhelming outpouring of support provided our family so much hope,” Brigitte said. “So many people hundreds of miles away back home were making gifts to COTA and were attending fundraising events. It was truly difficult to not have hope once we learned how many people cared about Peter and about our entire family.”
Brigitte regularly journaled throughout January to share Peter updates with the many friends and family members who were hours away and wanted to read about Peter and Brigitte’s days in Atlanta. On January 12th Brigitte wrote, “Peter is becoming increasingly more uncomfortable every day … his breathing is more labored and he is not his usual happy self. His stomach is extremely distended because his liver and spleen are extremely swollen. Our little boy has been such a fighter. We hope the right liver makes its way to us soon.”
On January 16th she wrote, “Adam is on his way back to Mobile. Peter and I were very sad to see him go, but we had a great weekend together. Thank you again for all the prayers and for anyone who has made a donation to COTA in Peter’s honor … we are beyond blessed to have the love and support of so many people.”
On January 21st, “Doctors have come by today and still no liver. Today is going to be a dreary day. It has started thundering and lightning here so we do not have our walk outside to look forward to. No good news. No bad news. Just blah.”
Just when it seemed like Peter would be on the liver waiting list forever and their family would be separated by hundreds of miles, Brigitte got The Call that a new liver was available for Peter. Arrangements were made for Adam to fly to Atlanta so he could be with Brigitte throughout the transplant surgery. On February 2, 2017, Peter received a whole organ that immediately began working correctly. His jaundice vanished overnight and he started on the road to recovery from liver disease. Peter remained in the Pediatric Intensive Care Unit at Egleston for a few days and was then moved to the transplant floor. Eventually he and Brigitte were relocated to the Ronald McDonald House so they were close for blood work, tests and checkups.
In late February, coinciding with a school break for Mardi Gras, Adam and Peter’s brothers traveled to Atlanta and the family of six was together for the first time since Christmas. Brigitte was ecstatic. This visit was exactly what the doctor ordered. Adam and the boys returned home to Mobile, and Brigitte and Peter followed just a few days later. Once home Brigitte and Peter have periodically returned to Atlanta for clinic visits. After more time had passed Peter’s blood work was drawn in Mobile and shared with the Atlanta team to keep some of the travel to a minimum. Brigitte recalls these days with gratitude. She wrote, “We knew we were not out of the woods yet. Every little ear infection or fever can be a cause for concern. With a compromised immune system, Peter is more susceptible to other illnesses and allergies. However, after the long journeys we have travelled … we are confident we can handle things like a dairy allergy or a double ear infection.”
One year post transplant, Adam looked back and journaled on COTA’s Team Peter G website. “This year has certainly had some ups and downs. To celebrate finally coming home, to be present at family functions, to even just see him on his first birthday … but the nervousness of any little virus or infection, to navigating the maze of medical care and medicines, even this week going to the Emergency Room for a high fever. Life with a toddler who has a major medical issue and a compromised immune system is anything but boring. There are times when I am amazed we even did it at all with Brigitte in Atlanta and me with the boys in Mobile. Thank you to everyone who prayed, sent well wishes and supported COTA in Peter’s honor over the past year. We are so grateful. We are appreciative to be a COTA family. There is so much anxiety when it comes to your child needing a life-saving transplant. The financial peace of mind COTA provides is such a blessing. Right now Peter can only say a few words like ‘mama’ and ‘dada’ and ‘cookie,’ but if he had a more extensive vocabulary I am sure he would join us in thanking everyone and celebrating just how far we have come in just one year!”
Today, three-year-old Peter is terrific. His liver seems to be doing very well. Barring any unforeseen illness or hospitalizations, Brigitte and Adam are happy to report they do not need to return to Atlanta for a whole year. Peter’s lab draws are down to every three months. He is doing very well developmentally -- talking a lot more and working on potty training. Peter continues to grow and has become a very active little boy who loves playing outside with his brothers.
According to Brigitte and Peter, “Peter remains a bright light in our lives … he is full of smiles and always able to provide a laugh for our family. We are simply not sure how we would have gotten to this place without being part of the COTA Family.”
“The Children’s Organ Transplant Association (COTA) gave our family hope by helping us handle the immense financial burden that comes with a life-saving transplant. Even with health insurance, we were receiving more and more medical bills each day. Our transplant social worker referred us to COTA and with their support and guidance, and through generous financial contributions from friends and family, we have been able to cover all of the transplant-related costs associated with Peter’s diagnosis and liver transplant. Without COTA, Peter’s transplant, his recovery and our ability to support the rest of our family would have been nearly impossible. The peace of mind COTA provides is truly invaluable and lasts … for a lifetime,” they said.
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.
COTA Kid Peter Ganucheau
Liver Transplant Recipient
