An expected delivery leads to a lengthy medical journey
Amber wasn’t expecting to welcome her newborn baby boy to the world on Oct. 13, 2016. Just 30 weeks pregnant, Amber and her husband, Terry, weren’t prepared for the many health challenges their youngest child, Warren, would encounter.
Amber was devastated to find out after giving birth and spending several weeks at SSM Health St. Mary’s Hospital – St. Louis that Warren had developed necrotizing enterocolitis. Necrotizing enterocolitis a disease in which bacteria invade the wall of the intestine, causing infection and inflammation that harm the bowel wall. In dire need of specialized medical treatment, Warren was transferred to SSM Health Cardinal Glennon Children’s Hospital, where he could undergo lifesaving intestinal surgery and receive customized medical care from the Glennon Intestinal Rehabilitation and Feeding (GIRAF) team and other medical specialists.
“I had no idea Warren would develop these problems before he was born,” Amber says. Necrotizing enterocolitis is typically diagnosed after birth, and there is no prenatal treatment available.
The stay-at-home mom and her husband, who works as a machine shop lead, were crushed they couldn’t take their baby home to meet the four older siblings that make up his blended family. Instead, the couple from House Springs embarked on a trying medical journey. At just one month of age, Warren had two surgeries to remove more than two feet of his bowel.
“It was really hard to watch him go through it. He was on a lot of pain medication. He was on a breathing machine a majority of the time,” Amber recalls.
Warren faces challenge after challenge
Three weeks later, Amber learned from doctors that Warren had developed bacterial meningitis that caused hydrocephalus, an accumulation of cerebrospinal fluid in the brain. Upon further testing, doctors diagnosed Warren with cytomegalovirus (CMV), an infection that can cause hearing loss and vision problems in infants. CMV is often present at birth, with symptoms arising a few weeks after delivery.
As Warren faced numerous medical challenges, Amber wondered how much more her baby would have to endure. “I remember thinking, ‘Is this ever going to stop?’”
After undergoing another surgery and having fluid drained from the left side of his brain, Warren took a turn for the better. “He was able to go down on his pain medication, open his eyes, and go off the breathing machine. We were so ecstatic the first time we heard him cry. We were so broken for him,” says Amber, “because he couldn’t cry on the breathing machine.”
GIRAF team offers support and advocacy
Through every step of Warren’s medical journey, Amber says the GIRAF team was her child’s greatest advocate and an invaluable support system for her.
“It was seriously the hardest time of my life, and they made it feel not as bad as it seemed,” Amber says, adding that all the physicians on Warren’s care team sat down with her regularly to discuss his progress and to answer her questions.
“We went over every little possibility — what we should expect, his state of mind. These questions were burdening us, and all of Warren’s doctors went over everything. They couldn’t tell the future, but they were so open and honest about his prognosis, and they wanted him to get better and succeed,” she says.
After eight months, Warren finally goes home...and thrives
After spending eight months at SSM Health Cardinal Glennon and receiving first-rate care in the NICU. Warren was finally ready to go home and join his four older siblings. It was then that his journey continued under the care of the GIRAF team.
“He came home, and it was back-to-back milestones,” Amber says.
Six months after going home, Warren was sitting up on his own. Two months later, he could eat on his own. He eventually graduated to drinking from a cup, pulling himself up, walking, and climbing.
Amber continues to travel 30 minutes from her home to SSM Health Cardinal Glennon each week with Warren for ultrasounds, X-rays, blood work, scans and other necessary follow-up care.
“The GIRAF team helps coordinate all of Warren’s appointments, so we can get them done on the same day,” Amber says.
Amber describes Warren as sweet and happy-go-lucky, and despite his CMV infection, she reports he has full hearing.
“He is just so happy all the time. He loves to give hugs and kisses. He’s starting to develop his character, and you can really see his personality starting to come out,” she says.
As Amber reflects on Warren’s time at SSM Health Cardinal Glennon, she says she’s “just so thankful. I love the GIRAF team. They’re so sweet and understanding. They listen. They all work for the best outcome for Warren.”
For parents who find themselves in a similar situation, Amber encourages them to contact the GIRAF team at SSM Health Cardinal Glennon.
“They work so closely with you. I think it’s important for parents who don’t understand or who need the extra help to know that the staff is there for them. It makes a big difference when you have a medical team doing all they can to help your child and help you through an emotional time,” she says.
