• December 19, 2014

Army family struggles with newborn's birth defect

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Posted: Wednesday, April 16, 2008 12:00 pm | Updated: 5:07 pm, Wed Aug 15, 2012.

By Laura Kaae

Fort Hood Herald

On the front door of Dottie and Sgt. Herold Davis’ Fort Hood home, a handful of signs welcomes visitors.

The first sign informs guests to take off their shoes and sanitize their hands upon entry. Another offers thanks — but no thanks — to visitors who may come calling with a tickle in their throat or any kind of infection or virus.

An industrial-sized dispenser of hand-sanitizer is mounted next to the doorway for anyone who thinks the Davises are joking about their signs — they’re not. When it comes to the life of their youngest son, they’re very serious.

But it wasn’t always this way.

When Dottie and Herold went to visit their obstetrician/gynecologist on July 19, 2007, the couple knew they were in for big news: “We were going to learn if it was a boy or girl,” Dottie recalls.

But the couple learned far more than that, because a nurse had discovered that not only was their child a boy, he had congenital diaphragmatic hernia — meaning his stomach, intestine, liver, spleen and kidneys were misplaced in his chest.

Instead of seeing the ultrasound of a healthy baby, the parents discovered their little bundle of joy would be suffering major health problems when he was born and that surgery would be needed within days of birth.

When the doctor informed them the baby had CDH, Dottie admitted she and her husband “had no idea what that was.”

“They handed us a pamphlet,” she said. “It was overwhelming to know that he had this.”

The cause of CDH, which occurs in about one of every 2,500 births, is unknown.

CDH occurs when the diaphragm does not form completely, and a hole is created in the muscle between the chest and abdomen. This hole allows the contents of the abdomen (intestines, liver, spleen and kidneys) to herniate (move into) the chest, which prevents the lungs from growing normally.

Dr. Cheryl Cipriani, a neonatologist at Scott & White Hospital in Temple and Zachary’s current primary physician, said in her 22 years of practicing medicine, she’s seen about 20 cases of CDH.

“The intestines go up into the chest and compress the lungs,” she said. “Then the lungs don’t develop how we want them to.”

Sometimes, Cipriani said, the lungs are so small in children born with CDH that they don’t live more than a few days.

“It’s a very bad disease,” Cipriani said.

“No one gave us odds,” Dottie recalls of her July checkup, “but they recommended we terminate.”

However, for the Davises, termination was never an option.

“I don’t believe in it,” Dottie said. “God gave him to us, and we will try to figure out what to do.”

As her due date grew near, Dottie said she and her husband, as well as their two other young sons, couldn’t have prepared for what was to come.

In late October, Dottie began experiencing preterm labor, and at 33 weeks, she was flown by helicopter from Carl R. Darnall Army Medical Center on Fort Hood to St. Luke’s Episcopal Hospital in Houston, where a team of neonatologists at adjacent Texas Children’s Hospital could take care of the baby.

After transport, Dottie gave birth via Caesarean section to 4-pound, 7-ounce Zachary Davis.

After five days, he had to undergo corrective surgery to move his stomach and patch his diaphragm hole.

“They had to put his organs back,” Dottie said.

Because little Zach was on such a high frequency ventilator to facilitate his breathing, Dottie had to wait weeks for the one thing mothers yearn to do after their child is born — cradle her son in her arms.

For the first two weeks, Dottie said Zach had four X-rays per day. In his first 18 days of life, Zach endured eight blood transfusions.

Despite his medical condition — and the fact that she couldn’t hold her son — Dottie said she grew close to Zachary.

“I just try to talk him through things,” she said. “I feel like we have a bond.”

In mid-January, Zachary was stable enough to be transported to Scott & White. Though Dottie was glad she could be closer to her husband and other sons, who had to spend most of their time at work and school at Fort Hood, she didn’t want to leave Texas Children’s.

“They work miracles there,” she said, noting that all the nurses and doctors were extremely helpful and kind to her family.

Still, Dottie knew it was time to bring Zachary at least a little bit closer to home.

“It took about a month to transition (back to being in Central Texas),” she said. “But we had normal life to deal with.”

After the transfer, Zach improved, but it took several months for his lungs to be well enough to allow his parents to take him home.

However, there is hope for Zachary to have fully functioning lungs, Cipriani said, noting that his lungs can grow over time.

“There is a space of air in his chest where his intestines used to be where the lungs can grow into,” she said.

As Zachary’s lungs continue to grow, he will require the use of less oxygen from an outside source, such as the tanks of oxygen his parents have at home.

The tanks are just a few pieces of equipment the Davises had to stock up on in the past few weeks, preparing for Zachary’s discharge from Scott & White. He went home Thursday.

The main floor of their home is filled with myriad medical equipment — IV bags, nebulizer treatments, a suction machine, a pulse oximeter, medicines, spare parts and tubing — as well as typical baby items, such as diapers and a baby swing.

Before Zach came home, Dottie admitted that while she couldn’t wait to have him at home, she was nervous about being in charge of his medical care on a day-to-day basis.

“It’s overwhelming the sense of responsibility with all this equipment,” she said.

Because he spent so much time in the hospital on his back, Dottie said Zachary is developmentally delayed a bit, but she’s hoping that will change now that he’s home with his family.

During the summer months, Dottie said they might be able to take him outside, so long as they bring their heaps of spare equipment and parts for all his medical needs, but in the winter months of flu season, Dottie said they are probably going to have to keep him inside.

His compromised immune system is just one of the many things the Davises are concerned about, but as of last week, they couldn’t wait to have him home.

Cipriani said Zachary’s lungs keep expanding and that he’s using about one-sixth of the amount of oxygen he used to be on when he arrived at Scott & White in January.

As his lungs expand, Zachary’s health will continue to improve.

“His lungs are not totally normal, but you can grow enough lung that you can be asymptomatic,” Cipriani said.

“He’s a delightful child,” she added. While he was at Scott & White, he had “all of our staff wrapped around his little finger.”

“It’s a wonderful thing that this family can have some semblance of normal life,” she said of Zachary finally going home.

“Hopefully, the worst is over,” Dottie said as she and Herold prepared for Zach’s homecoming last week.

A red, white and blue sign also hangs on the outside of the Davises’ front door. Dottie smiles at the gift a friend made for her.

The heart-shaped sign reads, “We can survive anything — we are an Army family.”

“It’s true,” she says softly.

Contact Laura Kaae at lkaae@kdhnews.com or call (254) 501-7464

March 31, 2008, was proclaimed Congenital Diaphragmatic Awareness Day following a campaign by the CDH support group Breath of Hope. Among the officials who joined in the proclamation were Gov. Rick Perry and Killeen Mayor Timothy Hancock.

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