Almost two years have passed since Nicole and Josef Ward’s son, Jude, had a liver transplant due to Alpha-1 Antitrypsin Deficiency (Alpha-1). You can read that story by clicking here.
Most people diagnosed with Alpha-1 don’t exhibit symptoms until they reach adulthood, when underproduction of the alpha-1 antitrypsin protein leads to complications in the lungs and eventual lung disease, according to the Children’s Organ Transplant Association (COTA). However, Jude was producing an abnormal form of the protein, which started pooling in his liver, damaging it.
By 22 months of age, Jude was experiencing serious liver problems. In December 2016, he was rushed to an emergency room, where doctors said Jude would need a life-saving liver transplant to survive.
The family quickly got Jude onto the waiting list for a liver transplant at a hospital in their native Florida, did seemingly endless research on liver disorders in children, and eventually joined COTA.
The Wards, who now live on the joint base, ended up having better luck seeking a transplant at the Children’s Hospital of Philadelphia.
“On July 6, 2017, at 7 am, we got our first call that the hospital had a possible liver match for Jude,” Nicole Ward recalled. “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 pm 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,” she added.
A couple of weeks later, Jude was back in the hospital for complications of his liver disease. By July 19, doctors had found a match for him, and the next day, he had a successful surgery.
“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,” Ward said.
In the months leading up to the surgery, the Wards said Jude’s body was failing him. He could only take in food through a feeding tube, he needed infusions to get rid of excess fluid in his stomach, he was tired all the time but could not sleep comfortably, and he would get bruises and sores that didn’t heal.
Though Jude, now 4, had a successful transplant, it still impacts his life in small ways, as he must make frequent visits to the transplant center for lab work, checkups and adjustments to his immunosuppression medications, his family said.
While the family temporarily lived in Philadelphia at the Gift of Life Family House, COTA was able to raise more than $60,000 for COTA in honor of Jude and his medical expenses.
The family also fears they might go through a similar journey all over again. Their daughter Lucie, born last July, has the same deficiency. She is now in the process of receiving regular lab work to check her liver enzymes and regular ultrasounds.
“We do not know where things are headed with Lucie and a liver transplant, but her doctors are keeping a close eye on her,” Ward said.
“Life after transplant is a balance of enjoying life but also being mindful of keeping Jude healthy. The biggest blessing our family has received is the blessing of perspective,” she finished.
Sources: Burlington County Times, Children’s Organ Transplant Association
Photo courtesy of the Children’s Organ Transplant Association.