Life

Castle Rock couple recount newborn’s tough road

Rare condition required surgery, hospitalization in first days after birth

Posted 6/27/17

For Castle Rock couple Jennifer and Debbie Stevenson, growing their household from a family of three to a family of four has been a sometimes terrifying but ultimately humbling experience, they say.

The couple married in 2011 after dating for two …

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Life

Castle Rock couple recount newborn’s tough road

Rare condition required surgery, hospitalization in first days after birth

Posted

For Castle Rock couple Jennifer and Debbie Stevenson, growing their household from a family of three to a family of four has been a sometimes terrifying but ultimately humbling experience, they say.

The couple married in 2011 after dating for two years. Debbie had always taken caution in relationships, she said, but two days after meeting Jennifer, Debbie told her best friend of 30 years she’d met the one.

After marrying, Jennifer and Debbie moved to Castle Rock from Atlanta. Ask them what they think of their new hometown, and they reply “Love it” in unison. They like their neighbors, they say people are friendly and they hear schools are great.

The women began trying to start a family when in Atlanta, but it was an emotional process, Debbie said, simply stating they’d had some losses. Finally, in Castle Rock, they welcomed their first son, Zachary, now 2 years old.

Then Jennifer became pregnant again, but this time it resulted in a tumultuous journey through news of a significant complication, a choice not to terminate their pregnancy, and weeks in the hospital once their baby, Eli, arrived.

Difficult news

“He was looking good,” Debbie said of their now 8-week-old son, Eli. “All the ultrasounds and tests were looking good.”

But at 18 weeks, the ultrasound technician said something might be wrong. Jennifer and Debbie were sent to a maternal-fetal doctor on Dec. 13. After rounds and rounds of testing and ultrasound imaging, the doctor ruled out a number of potential issues and told the Stevensons he believed the baby was suffering from a diaphragm hernia.

At first the Stevensons were relieved.

To them, a hernia sounded less serious than a heart defect or having organs in the wrong place, as doctors first suspected — but then their doctor further explained Eli’s condition.

“He stopped and said, ‘It’s not that kind of hernia,’” Debbie said.

A rare condition

Eli was diagnosed with a rare condition called congenital diaphragmatic hernia, or CDH. It occurs in about 1 in every 2,500 births in the United States, said Dr. Ken Liechty of the Colorado Fetal Care Center at Children’s Hospital Colorado.

The Stevensons learned on Dec. 13, before they would eventually go to the Colorado Fetal Care Center for care, that CDH means a baby’s diaphragm is improperly developed. This allows organs in the abdomen to move into the chest cavity, crowding the baby’s heart and lungs and preventing proper growth. The birth defect requires surgery to correct.

“These babies can be the sickest in the hospital,” Liechty said.

The severity of health complications from CDH runs on a spectrum depending on how much of the diaphragm was underdeveloped. Some babies can recover quickly after birth, but others have long-term health complications.

In Eli’s case, one lung was smaller than the other, and his heart had been moved beneath his armpit by the other crowding organs, Debbie and Jennifer said.

“When he explained it, for me, it took my breath out. It felt like I had just been sucker punched,” Debbie said of their visit with the first maternal-fetal doctor.

“I was just scared,” Jennifer said of CDH. “We didn’t know what it was.”

Tough choices

The maternal-fetal doctor told Debbie and Jennifer one of their options would be terminating the pregnancy. Their first doctors brought the option up repeatedly, Jennifer and Debbie said.

“It was never said, ‘You should do this.’ It was presented as an option and I think that you have to do that as a doctor,” Debbie said. “I thought it was presented too many times.”

The women left the doctor’s office devastated, Debbie said, and rode home in near silence. Before making any decisions, however, they did their best researching CDH online. In less than a day, they knew terminating was the wrong choice for them.

“As long as doctors gave us a chance that he could have a good, normal life,” Jennifer said, “we figured we’d deal with whatever it was.”

The couple was prepared to find the best treatment for CDH, even if that meant temporarily relocating. Their online research led them to children’s hospitals in Boston and Philadelphia. After consulting with a representative at the children’s hospital in Boston, they learned there was a clinic specializing in CDH just 35 minutes to their north at Colorado Fetal Care Center with Children’s Hospital Colorado.

Pushing forward


On Dec. 30 they began more rounds of testing, this time at the Colorado Fetal Care Center. Terminating the pregnancy never came up from that point on, Debbie and Jennifer said.

“We didn’t talk to them about that,” Liechty said of termination, “because this was a relatively good prognosis given our expertise with this.”

Liechty, the surgeon who would ultimately operate on Eli at four days old, said many healthcare providers don’t have expertise in CDH and that there is much misinformation out there on the subject. But at Colorado Fetal Care Center, the Stevensons were able to learn Eli’s odds at recovery were good despite the seriousness of CDH.

“We knew his entire stomach was up in his chest and we knew his small bowel was in his chest and we knew his spleen was in his chest,” Debbie said. “Later we’d find his colon was up in his chest too.”

At 38 weeks, Eli was born in what Debbie and Jennifer described as a totally controlled environment, although at the time it looked like terrifying chaos to Debbie.

A chaotic birth

Jennifer and Debbie were warned that Eli wouldn’t be able to cry at birth. The problems with his lungs created by CDH would restrict his breathing and sound in those first minutes, doctors said.

But he cried, if only for a brief moment, before doctors rushed him to a stabilization room where he was surrounded by a team of about 15 people, Debbie said, and then sedated.

“He was like a little human pincushion,” Debbie said.

While some doctors tended to Jennifer, Debbie looked on as more doctors and nurses swarmed around Eli in the stabilization room next to their delivery room. At times, not understanding that sedation was normal, Debbie couldn’t tell if her motionless, silent son was alive or dead.

She could see doctors work on Eli, take a step back, look at a monitor and shake their head, she recalled. Eventually a nurse came to console her and explain everything was going normally, despite the hectic scene.

“It was like a finely tuned dance. Everybody knew exactly what to do but it was totally chaotic at the same time,” she said. “That was hard, watching him.”

After more than two hours, Debbie estimated, Eli was a stabilized, 7-pound, 11-ounce baby.

The road to recovery

For more than six weeks after his birth, Eli remained in the hospital as he recovered from surgery. Debbie and Jennifer were not able to hold their son for nearly a week, but they made sure to place a hand on his head or feet to let him know they were there.

The women spent no more than two nights away from him during that time, going home only to make Zachary dinner, tuck him into bed and then drive back to Aurora to sleep in Eli’s room.

Those weeks were exhausting, they said, describing the days as a blur.

“I didn’t care when he came home as long as he came home,” Debbie said.

When that day came, it was a bittersweet goodbye. Jennifer and Debbie had become close with their doctors and nurses, but they were grateful to come home as a family.

Today, Eli lives at home in Castle Rock. He needs an oxygen tank and some medicine, but is overall a healthy baby, they said.

“He’s just a happy kid. He’s just very comfy and likes to snuggle. He’d probably sleep through the night if we let him,” Jennifer said, explaining they must feed him every four hours.

“He’s got a very sweet disposition, which is incredible with everything he’s been through,” Debbie said. “You’d think he’d be more agitated.”

A humbling experience

The experience has left the women with a new outlook on life, they said.

“For me, I’ve been totally changed and humbled,” Debbie said. “You get a much greater appreciation for priorities and for realizing that if you have your health and you have your kids that’s all that matters.”

Jennifer agreed, and said in moving on, they are most looking forward to simply being a family.

“Just watching our boys grow,” Jennifer said. “Watching them grow up.”

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