Family raises awareness of congenital hernia affliction
by Laura Braddick
lbraddick@cherokeetribune.com
March 30, 2011 10:39 PM | 4008 views | 0 0 comments | 13 13 recommendations | email to a friend | print
Chris and Alison Higgins read a story to their 16-month-old son, Jackson, at their home in Harmony on the Lakes. The couple is raising awareness about congenital diaphragmatic hernia, a condition Jackson had when he was born. <br>Cherokee Tribune/Todd Hull
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Like many toddlers, 1-year-old Jackson Higgins loves to play outside, dance while listening to music and laugh.

But there was a time before he was born when his parents, Alison and Chris Higgins of Harmony on the Lakes, weren't sure he would ever do any of that.

"Even the small things and things that may seem like inconveniences to some parents are big to us," Mrs. Higgins said. "Like when he cries - we thought he wasn't going to be able to cry."

Jackson was born on Nov. 18, 2009, with a congenital diaphragmatic hernia, a rare but not uncommon birth defect where the diaphragm fails to fully close, causing abdominal organs to enter and crowd the chest cavity.

Just a week after being born, Jackson had to undergo surgery to correct the hernia, which put pressure on his lungs and made it hard for him to breathe on his own.

After about four weeks in recovery at Children's Healthcare of Atlanta at Egleston, Jackson came home.

Emotionally and spiritually changed by their experience, the Higginses have dedicated their time to increasing knowledge about CDH.

March 31 is CDH awareness day to close out CDH awareness month as recognized by the nonprofit Breath of Hope Inc.

"We want people to be aware of what it is," said Mrs. Higgins, community relations coordinator at Northside Hospital-Cherokee. "We had never heard of it before it happened to us."

Jackson is now in good health and only takes acid reflux medicine once a day because of his weakened diaphragm, which helps control the esophagus.

"Jackson is a best-case scenario for a CDH patient," said Higgins, a 13-year veteran of the Cherokee Sheriff's Office. "He's an example of a lot of prayer and effective medical intervention."

Those pieces would not have come together if it weren't for prenatal detection, the parents said.

An ultrasound technician spotted signs of CDH when Mrs. Higgins was 33 weeks into her pregnancy.

The next few weeks were full of uncertainty and anxiety as the couple learned about the disorder.

"We didn't understand why this happened to us," Mrs. Higgins said. "But we pulled together in ways we've never had to."

They prepared for the worst and prayed for the best.

Resources they found online lead them to scary statistics and results but their doctors at NH-C and Children's Healthcare offered realistic information.

"There were no surprises," Mrs. Higgins said. "They told us exactly what to expect and what would happen."

As Jackson was about to be born, Higgins said the room filled with doctors and specialists to see that he immediately went into the care he needed.

CDH occurs in about one out of 2,500 babies. But of that number, only about half survive, and some survivors are left with other complications.

About 85 percent of cases are found prenatal, but 15 percent are not discovered until after birth.

"We want to raise awareness so if other families are diagnosed it won't be as traumatic," Mrs. Higgins said.

Dawn Williamson, president and founder of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support said CDH doesn't have the name recognition like other birth defects.

"Families have to always explain what CDH is," she said. "No one ever talks about it or knows about it, which makes it a big problem when asking for money to help families and support research."

Spreading the word through the local community like what the Higginses are doing is important, Ms. Williamson said.

"When you look at the money going to research, it's nothing compared to how many babies are dying each year," she said. "That is why every bit helps."

The Higginses said they are lucky to be near a group of quality doctors and facilities in Atlanta as well as a supportive community in Cherokee.

"One thing the hernia taught us is we live in a community that's very supportive," Higgins said. "It just goes to show though it may be big, it's small when it pulls together."
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