For Jessica and Dennis Besler, the whole thing started with an MRI scan of their second son, Camden.
The Milwaukee couple had already welcomed a son named Brayden to their family less than two years earlier when Jessica became pregnant with Camden. It was during a routine ultrasound appointment that she learned her new son was showing early signs of CDH.
Congenital diaphragmatic hernia, or CDH, occurs during a pregnancy when the child’s diaphragm fails to close during prenatal development. This opening allows the organs housed in the baby’s abdomen, including the stomach and liver, to migrate into the chest. That migration impacts the growth and development of the lungs. As such, the lungs will be smaller and less developed, which in turn causes high blood pressure in the lungs.
Newborns affected with CDH require immediate care at delivery, making early and accurate diagnosis a vital importance. In Camden’s case, a high-level ultrasound taken when he was 15 weeks showed his intestines and stomach were pushing into his chest and forcing his heart to the right side.
They started Camden’s treatment at the Children’s Hospital Wisconsin. Because his liver was “down”, doctors there gave them a 70 percent chance of survival. “Liver-up” cases tend to be more severe, as the organ takes up more space in the abdomen and causes the lungs not to grow.
The pregnancy continued fine until an MRI scan at 32 weeks revealed the liver had “gone up”, which meant his chances of survival just went down to 30 percent.
“The doctors kept hoping that Cam would beat the odds because everything until they are born can change,” Jessica said. “But that didn’t sit well with me.”
She joined several CDH Facebook groups and started learning as much as she could about treatment options. During her research, one doctor’s name kept coming up: Dr. David Kays, known for taking on the most severe CDH cases. After several phone calls and messages, Jessica and Dennis got in contact with Dr. Kays, and after hearing the specifics of Camden’s situation, Dr. Kays was able to give them an 85 percent chance of success.
However, it would require a trip to Florida for the birth.
The family met, and they agreed Dennis and Jess would fly to Florida while 19-month-old Brayden stayed with their parents. They contacted the Ronald McDonald House before leaving, and received word there was room for them by the time the airplane landed. After meeting with Dr. Kays, it was decided Jessica would stay while Dennis flew home, grabbed what they would need for an extended stay, and drive back.
“I had always heard about RMHC, but I just knew it was something about kids in the hospital,” Jessica comments. “How amazing it truly is and what it does. I don’t know what we would have done without the support of volunteers, and meal preparation people and other families.”
Jessica was induced, and Camden was intubated, sent to CICU, and underwent repair surgery the next morning. As he recovered, Jessica and Dennis got to know the other CDH families staying at RMH.
“No one can possibly understand what you are going through except for another CDH family,” Jessica said. “But each case is so different – some have heart issues, some go home in 20-30 days, some need feeding tubes – they are all very different journeys.”
“At first, I didn’t know if I could do this. But soon you’re sharing laundry duties with these families, and then I didn’t want to leave.”
“The family dinners were our escape,” Dennis said. “This was their new home, and now we’re life friends with these people. We’d all look forward to those times to be more normal again. “
Camden was discharged after 67 days in the hospital and another week at RMH but had to be rushed back a week later due to breathing troubles due to a common-but-frightening case of reflux that required more surgery and a feeding tube. They ended up staying at the RMHC for an additional 150 days.
Jessica recalls that their time at RMH could have been very isolating, but the other families staying made that a wonderful impossibility. The family dinners, the shared laundry duties, the opportunity to get to know other families facing similar situations, all within walking distance of the hospital.
“You get to miss the faces of the volunteers, the people who were your family for so many months,” Jessica said. But best of all, they were able to bring Brayden down to stay with the family during Christmas, where they traded presents in the back room. “It mattered because we were together.”
NOTE: Covid-19 has had a drastic impact on Ronald McDonald House Charities of Tampa Bay. The houses are now closed to outside visitors for safety reasons. This means that new resources must be found to pay for family meals that volunteers groups used to provide. Safety protocols also mean that some families are not eligible to stay in the houses, so they are offered free hotel rooms and meals provided through RMHC. Cancelled fundraisers have caused a deficit with more expenses than ever. Every donation makes a difference. www.RmhcTampaBay.org