(Editor’s note: This is the first of a series of occasional columns that looks at stories and photos of the past from the BND archives and tries to answer the question, “What happened?” Heidi Wiechert is a former librarian and current newsroom assistant who maintains the BND files.)
I was intrigued by a photo of a mother and father gazing affectionately at a cherubic-faced child. There was no information attached to the picture other than a scribbled note: “Janet, Steve and Jared (age 3) Abbink.”
Who were they? What happened to them?
Research revealed that the child, Jared, suffered from a hereditary condition called ornithine transcarbamylase (OTC) deficiency. This disease causes a build up of ammonia in the blood that can be fatal.
Jared was the first child in the United States to receive a liver transplant in order to combat OTC, and the groundbreaking surgery took place on Aug. 29, 1986, at Barnes Hospital in St. Louis.
Jared’s parents were stationed at Scott Air Force Base at the time. The operation was successful, but Jared died at age 13, not of OTC, but from other medical issues.
Jared’s mother, Janet Myers, who now lives in Florida, said, “Jared was such a precious and unusual child. He had an old soul.” Janet was sadly familiar with OTC, having lost an older son named Brandon to the same disease at 5 days old. “I knew from day one I would lose Jared, but I was called to have another baby.” She and Steve had five other children.
A woman of deep faith, Janet said she has come to terms with the loss of her sons and found comfort in her memories, grandchildren and, surprisingly, cardinals.
“One morning, I was holding Jared on my lap, and a bright red cardinal alighted outside the window and sat there. I didn’t expect that it would stay because cardinals are rather skittish birds, but it did. Jared turned to me and said, ‘Momma, after I’m gone, any time you see a cardinal that will be me coming back to say hi.’ And wouldn’t you believe it, I see them all the time.”
Janet said when she moved into her new home, there was a cardinal there that day flitting from one bush to another out front. “You don’t stop loving people just because they’re gone. I think that you found this picture at this time because it is another way for Jared to say hello,” she said.
Jared’s sister, Amanda Aidt, now 29, said she named her son after her brother.
“He was an amazing person who was loving of everyone,” Amanda said in a text message.
One morning, I was holding Jared on my lap and a bright red cardinal alighted outside the window and sat there. I didn’t expect that it would stay because cardinals are rather skittish birds, but it did. Jared turned to me and said, ‘Momma, after I’m gone, any time you see a cardinal that will be me coming back to say hi.’ And wouldn’t you believe it, I see them all the time.
Janet Myers, mother of Jared Abbink
Dr. Yumirle Turmelle, medical director of the Liver Care and Transplant Center at St. Louis Children’s Hospital, said the center is still on the cutting-edge of liver transplants in children. “One of the youngest OTC patients to receive a liver transplant was 10 days old, and the surgery was done here in St. Louis.”
The emotional cost of treating children who have life-threatening disorders is naturally high, but so are the rewards.
“We bond with these patients,” said Turmelle. “We celebrate the first year anniversary of transplant surgery, and then we get to see their life milestones. ... It is very rewarding — we know these children their whole lives. Transplant surgery survival rates are very high, and studies are currently being run concerning immune suppression medication to improve the quality of children’s lives even more. ”
Though information and community support may be easier to find through the internet and social media, medical costs remain high. Fortunately, Barnes Hospital offered to cover the cost of the 1986 transplant, but the Abbinks were expected to pay the other costs associated with Jared’s hospital stay. This totaled nearly $181,000. A community fund was established to help the family deal with the staggering medical bills.
There are currently organizations to help with the high cost of rare diseases. One is the National Organization for Rare Diseases (NORD), which assists patients with co-pays and expensive medications. Sometimes the drug companies that have developed the medicines help subsidize the cost to the people who need them.
OTC mainly affects boys. It is a genetic disease that babies are born with, doctors said.
For children who don’t receive a liver transplant, a combination of three different methods is used to treat OTC deficiency, according to Dr. Kathy Grange of the Division of Genetics and Genomic Medicine at St. Louis Children’s Hospital. One is amino acid supplements; the second is a low-protein diet; and the third are medications that she called “ammonia scavengers.” There have been some advancements in these scavengers since 1986, she said.
One option is Buphenyl, which Grange called “smelly and unpleasant.” It costs about $65,000 per year. Another option is Ravicti, which Grange described as “nearly tasteless and odorless.” The cost for Ravicti can be as high as $250,000 per year.
Why is the medication so expensive? People in the pharmaceutical industry say it starts with the cost of research and development. It’s costly to develop medicines and receive FDA approval. So, while some drugs that have been on the market a long time are cheap, the drugs that are created to treat rare conditions don’t allow for cost sharing across large groups of people.
Medical costs may be as problematic today as when this photo was taken, but something else remains the same — the enduring love of a mother and father for their child.
Jared’s obituary appeared in the March 18, 1998, issue of the Belleville News Democrat. It read, “His life was full of love from a family, a church and strangers who wrote to tell him how his story gave them hope.”
“His life was full of love ...” — and it truly was. We have photographic evidence.
For more information
Organizations to help families of children with OTC include:
How to help
Mid-America Transplant, which supports the transplant and organ donor community in the St. Louis region, will hold a “Celebrate Life 5K Run/Walk 2017” at 8:30 a.m. Saturday, April 29, at Creve Coeur Lake Memorial Park, 13725 Marine Ave., Maryland Heights, Missouri. For more information, go to the group’s website: www.midamericatransplant.org