Parents’ grief inspires formation of charities
Posted on Sunday, July 6, 2008
Jack Ryan Gillham would have celebrated his first birthday today.
Instead, his parents, Matt and Bethany Gillham of Hindsville, are celebrating his memory in the form of a fledgling nonprofit foundation that is raising money to aid parents of critically ill children.
Jack died when he was just 6 weeks old of complications from congenital diaphragmatic hernia, or CDH.
It’s a birth defect in which the thin layer of muscle that separates the abdomen from the chest cavity doesn’t properly form. Without the diaphragm as a separator, organs such as the stomach and intestines can drift into the chest cavity while the baby is still in the womb, and inhibit growth of organs there.
Though largely unknown, the disorder affects about one in every 2, 000 babies born in the United States, including stillbirths, according to the American Pediatric Surgical Association.
The Gillhams are just one example of a family who has turned their grief into a grassroots foundation to benefit others.
Their foundation raises money that directly aids families. Other foundations, such as one established by a Fayetteville couple, benefit hospitals.
“It takes special people to take something that’s been a tragedy in their lives and turn it into something positive,” said Shannon Ramer, a registered nurse in Arkansas Children’s Hospital’s neonatal intensive care unit who helped care for Jack.
“I can’t explain how awesome I think they are for being able to do what they’ve done.” John Bel, president of the Arkansas Children’s Hospital Foundation, said the hospital benefits from many families that either give a one-time gift or regular donations. The foundation raises about $ 15 million in the form of 50, 000 gifts from more than 25, 000 donors a year.
But only a handful of families form their own foundations, Bel said.
Angie and James Graves of Fayetteville started the Jackson L. Graves Foundation in honor of their son. Jackson was born with a birth defect known as a giant omphalocele, in which organs normally located in the abdomen are pushed out into the umbilical cord, forming a sac that protrudes from the body.
About one in every 5, 000 babies is born with an omphalocele, according to the American Pediatric Surgical Association.
Born Oct. 12, 2004, Jackson spent four months and one week in intensive care at Arkansas Children’s Hospital before dying of complications from one of several surgeries to try to repair the defect. Angie Graves said she and her husband started the foundation in March 2005 to help them cope with their loss. “It just felt like the right thing to do to keep alive his memory and have a positive impact at the same time,” she said. “Part of it is maybe selfish; we wanted to make sure he wasn’t forgotten. We want people to remember who Jackson was. We want to tell his story over and over, and we want people to see his face. “ It’s just kind of a way of keeping him here with us when he’s not.” JACK’S STORY Bethany Gillham learned she was pregnant with Jack in November 2006. She was transferred to a high-risk obstetrician in Little Rock after doctors noticed something “alarming” in a routine ultrasound.
The next few weeks were filled with uncertainty, as the couple waited for a diagnosis.
“We sort of expected it to be something that wasn’t going to be great, but something that we could fix,” she said.
In March 2007, Jack was diagnosed with congenital diaphragmatic hernia.
“We were devastated,” she said. “We had to drive back home from Little Rock that day and we probably said two words to each other the whole way back. There’s really not anything you can say.” The defect is one of the most severe that doctors see in newborns, said Dr. Robert Lyle, comedical director of the neonatal intensive care unit at Arkansas Children’s. But not all children are as sick as Jack.
Fifteen years ago babies with congenital diaphragmatic hernias had an 80 percent chance of dying from it, but medical advances have changed that. Now babies born with the disorder have a 70 percent or better chance of surviving, Lyle said.
Bethany Gillham went into labor six weeks early and was flown by air ambulance to the University of Arkansas for Medical Sciences Medical Center. There, doctors stopped the birth and put her on three weeks’ bed rest to give Jack more time to grow and get stronger.
Jack was born weighing 6 pounds and 3 ounces at 4: 51 p.m. on July 6, 2007.
Because of the defect, Jack had a hole on the left side of his diaphragm, and his small intestine, spleen, stomach and parts of his liver and colon were all in his chest, Lyle said. Doctors got to work right away.
“They held him up for a split second so we [could ] snap a picture, and they just whisked him out of the room to get him stable,” Bethany Gillham said.
The next few weeks were an emotional rollercoaster as Jack underwent surgery to implant an artificial diaphragm, and he was put on a machine to help him breathe and to keep his heart beating. Doctors put him on dialysis after his kidneys failed at 4 weeks old.
“They told us that the surgery was a life-or-death deal... because he was so swollen at that point.” After the surgery, Jack went into cardiac arrest. Doctors were able to stabilize him, but they warned the Gillhams that their son was very fragile.
“I guess they knew at that point that his chances of survival were very, very slim,” Bethany Gillham said.
On Aug. 16, an MRI showed Jack’s troubles were even worse than previously thought.
“They said he had severe global brain damage and that he would never walk or talk or recognize us,” Bethany Gillham said.
His kidneys weren’t functioning, and doctors didn’t expect him to live much longer. After talking with family through the night, Bethany and Matt Gillham told the doctor the next morning they had decided to take their son off life support.
Jack was given a sedative to ease his pain, and moved to a quiet, secluded room. “They took out the breathing tube, and he kind of cried a little. We had never heard him make a sound,” Bethany Gillham said. “Even though it was so really sad, it was like, ‘Oh my gosh, he’s making a noise.’ He didn’t fight or struggle, he just kind of gasped. It only took a couple of minutes for him to pass away.” That night, Bethany Gillham said she had her first peaceful sleep in months because she knew her son wasn’t suffering anymore.
FORMING FOUNDATIONS Like the Graveses, Bethany and Matt Gillham were determined to keep their son’s memory alive. The Jack Ryan Gillham Foundation was established in October 2007.
Bethany said their initial goal is to help about three families a year with whatever they need — be it food, gasoline or help paying bills or rent while their child is in the hospital.
So far, the foundation has raised $ 10, 000. It will host a silent auction and golf tournament in Huntsville on July 19. More information is available at the foundation’s Web site www. jackryangillham. org.
Bethany Gillham said she and her husband are proud to be Jack’s parents. They run the foundation in their spare time, often staying up until 2 a.m. working after putting their daughters Lexi, 9, and Kelsey, 6, to bed.
“How many people can honestly say that their baby changes lives of strangers that will never, ever meet him ?” she said. “It’s really humbling and amazing to Matt and I that our son, who’s not even here anymore, is literally changing people’s lives. They’ll never forget him for what we’re doing with this foundation.” Proceeds for the Jackson L. Graves Foundation (www. jacksongraves. org ) go directly for the neonatal intensive care unit at Arkansas Children’s. The foundation has raised about $ 150, 000 to date, and gives about $ 15, 000 a year to the hospital.
Angie Graves said people who haven’t had a critically ill child probably don’t realize how big the needs are.
“There are always, every single day, babies coming into these hospitals needing critical attention,” she said. “They don’t slow down because it’s a holiday weekend or it’s Sunday.... Every day there are families just like us who are thrown into this completely blindsided. A lot of them don’t have the resources that we had. We were very blessed.” Bel, of Arkansas Children’s Hospital Foundation, said everything helps.
“We are very privileged in so many ways to have parents who can, out of their sadness and their loss, do wonderful things for others,” he said. “It’s a powerful story and we’re all better for it.”
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