July 1, 2019 — Each year on July 4th our nation pauses to celebrate our independence and to recognize those individuals who protect our freedoms through their selfless service to our United States of America. For a COTA family, July is an especially important month to celebrate Dad Josef’s ongoing service in the U.S. Air Force and their son Jude’s life-saving liver transplant that took place two years ago on July 20th.
Nicole and Josef Ward of Fort Dix, New Jersey (formerly of Coral Springs, Florida), vividly remember the birth of their second son, Jude, in April 2017. Big brother Josiah was at home anxiously awaiting news about the baby’s arrival, and Nicole and Josef were excited to meet their second child. Life seemed ‘normal’ for the now family of four as Nicole and Josef settled into raising their two boys. But when Jude was just four weeks old he started having seizures. They rushed the baby to their local hospital’s emergency room and soon heard terrifying news — Jude was bleeding in his brain. Surgery was performed to remove the blood, and Baby Jude was given a blood transfusion and an injection of Vitamin K to help with clotting.
The medical team quickly got to work to determine the cause of the brain bleed, and it was soon discovered Jude’s liver enzymes were extremely elevated. In November 2015 genetic testing was initiated and the baby was diagnosed with Alpha 1 Antitrypsin Deficiency — an inherited disorder. In Jude’s case, the Alpha 1 protein was being made abnormally in his liver and instead of being secreted to do its job, it was stuck and causing cirrhosis of the liver. Nicole and Josef were frightened by the news but were willing to do whatever was necessary to keep their baby boy alive.
Most people diagnosed with Alpha 1 Antitrypsin Deficiency do not exhibit symptoms until they are adults when underproduction of the protein causes eventual heart and lung damage. Baby Jude was producing an abnormal form of the protein, which started pooling in his liver and causing damage. By 22 months of age, Jude was experiencing serious liver problems and his stomach began blowing up like a balloon. In December 2016 Nicole rushed him to the emergency room where she and Josef were told Jude would need a life-saving liver transplant to survive … and would likely need it soon.
In January 2017 Nicole and Josef decided to initiate the evaluation process that was required for Jude to be listed for a liver transplant at Jackson Memorial Hospital in Miami, Florida. Nicole spent every moment she could to research liver disorders in children. She wanted to make sure Jude was treated at a highly ranked transplant center for children with his disorder. While doing hours of online research including visiting Facebook pages and online support groups, she encountered a COTA Mom in Florida whose daughter had already received her life-saving liver transplant in Pennsylvania. She strongly encouraged Nicole to reach out to the Children’s Organ Transplant Association (COTA) to learn more about the support and guidance COTA provides.
“After receiving a blow like the news that your child needs a transplant to survive, we needed to understand all of the processes better because we wanted the absolute best outcome for Jude,” Nicole said. “We contacted COTA and explained our situation — specifically that we wanted to take Jude to Pennsylvania for another opinion but we would not be able to afford the expenses on our own. From that first call on January 11, 2017, COTA took the reins and explained to us how we could make it happen. They instantly gave us hope.”
Nicole and Josef reviewed and completed the information COTA mailed to them and the Wards became 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 February 7th a COTA fundraising specialist trained the volunteer team for the COTA campaign in honor of Jude W. COTA is a 501(c)3 charity so all 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.
Almost immediately family and friends began hosting successful COTA fundraisers in honor of Jude W. Due to their rapid fundraising success, in March 2017 Nicole and Josef were able to take Jude to the Children’s Hospital of Philadelphia for an evaluation and second transplant opinion. According to the Wards, “It did not take long to see this is where we wanted Jude’s care to happen.” It became quickly apparent that Jude was too sick to make the necessary trips back and forth from Florida to Pennsylvania to be close to his transplant team. Therefore, the decision was made that Nicole and Brother Josiah would stay at The Gift of Life Family House close to the transplant center while Josef travelled back to Florida to continue his service with the U.S. Air Force. When work permitted, Josef would travel to Pennsylvania to spend time with his family.
According to Nicole, “The months of March, April, May, June and July were the most awful months of our lives. Thankfully in May 2017 the U.S. Air Force relocated Josef on a humanitarian order to a base near the Children’s Hospital of Philadelphia so we were able to go through this together as a family.”
During these months Jude was literally clinging to life as his body was failing him. His little body was starving. He needed a feeding tube … he needed constant infusions to get rid of excess fluid on his stomach … he was tired all the time but could not sleep comfortably … he had non-stop nausea and diarrhea … and he would get terrible bruises and sores that simply would not heal. Nicole remembers how heart wrenching it was to continually be admitted to the hospital and then discharged only to realize a new liver was the best chance they had to save their toddler’s life. Nicole and Josef, and the extended family members who would come to Philadelphia to help care for Jude and offer respite for his exhausted parents, had a single goal — to do everything possible to make Jude comfortable and happy while waiting for the call that a liver was available.
“On July 6, 2017, at 7:00 a.m. we got our first call that the hospital had a possible liver match for Jude. We spent the entire day at the hospital doing pre-op tests on Jude and making him fast only to find out at 9:30 p.m. that upon retrieval of the liver it was determined not to be the best match for our Jude. We went back to our temporary transplant home broken more than ever but still clinging to a little hope that Jude’s call would come soon,” Nicole said. “On July 18th Jude was readmitted for complications of his liver disease. The next day, July 19th around 3:00 p.m. Jude’s liver transplant team came in to tell us they had a match for Jude. We were very relieved but could not quite let ourselves believe this was the one until he was wheeled into surgery about midnight that same night.”
Jude’s liver transplant was completed on July 20, 2017. His transplant surgeon met with Nicole and Josef to tell them the transplant surgery was a great success. Jude was discharged to the family’s transplant housing just 11 days after transplant.
Throughout these days of waiting, while the family was living in Philadelphia, the COTA in honor of Jude W volunteers were fundraising non-stop. In a short matter of time, they were able to raise more than $60,000 for COTA in honor of Jude — funds that were a true lifeline for the Wards.
According to Nicole, “I do not know how to begin to express my gratitude for the Children’s Organ Transplant Association and that COTA Mom who opened the door for us at the outset of Jude’s transplant journey. COTA gave us the ability to take Jude for a second opinion at a top transplant center hundreds of miles away from our home. Without COTA, we simply would not have been able to provide our son with the opportunity to receive the best medical care possible for his disease.”
“In the midst of putting our lives on hold to care for Jude, COTA made sure everything else was taken care of,” Nicole continued. “COTA helped arrange for travel for our family members to come and stay and help me care for Jude and Josiah while Josef had to work in Florida. COTA ensured our temporary living quarters were paid for during the months we lived in Philadelphia. Most importantly, I have always loved that anytime I call COTA’s 800 number someone with a warm and caring disposition is able to calm my fears and provide support and guidance.”
“COTA has carried our family through the challenges of Jude’s transplant and continues to help today nearly two years post transplant,” Nicole said. “Knowing COTA is there for us now and will continue to be by our side as Jude continues on his transplant journey is priceless.”
“In our family’s world of uncertainties, trusting we can count on this amazing organization and knowing they genuinely care about our family and want to help is huge. COTA’s presence in our lives alleviates a huge burden of stress we would likely be buckling under right now if we had not found COTA,” she said.
Life with Jude is most definitely one day at a time. He has just celebrated his 4th birthday and while he experiences little bumps in the road here and there, Nicole and Josef are grateful to be so far from where they once were with a medically challenged baby and toddler. While Jude is almost two years post transplant, there are still frequent visits to the transplant center for lab work, checkups and adjustments to his immunosuppression medications.
This year’s 4th of July celebration will be full of fireworks, fun and lots of excitement for the Ward Family of 5. Baby Sister, Lucie, was born in June 2018. Shortly after her birth it was discovered that Lucie also has Alpha 1 Antitrypsin Deficiency. Lucie is now in the process of receiving regular lab work to check her liver enzymes and regular ultrasounds. According to Nicole, “We do not know where things are headed with Lucie and a liver transplant, but her doctors are keeping a close eye on her. Josef and I are so grateful to know we have COTA to help if and when that need arises once again for our family.”
Once the fireworks and grills fizzle, the Wards will be celebrating Jude’s second transplantaversary on July 20th. They will undoubtedly take a moment to remember Jude’s donor angel and the family that made the selfless decision to save Jude’s life. They also know they may be facing a transplant journey once again with Lucie.
“Life after transplant is a balance of enjoying life, but also being mindful of keeping Jude healthy. The biggest blessing our family has received from Jude’s Journey of Hope is the blessing of perspective!” Nicole added.
Happy 4th of July Ward Family from your COTA Family … and thank you for your service to our country, Josef!