Jolliff’s describe joys and struggles of raising son with CDH

Cayden and his Family (Gretchen, Kevin, Riley, Cayden)

Cayden and his Family (Gretchen, Kevin, Riley, Cayden)

The Jolliff family is the picture of living in the moment. Their life is equated by the day – maybe even the hour or the minute. Each moment holds a small miracle. His name is Cayden.

Kevin and Gretchen Jolliff were married in June of 2014 and excited to grow their family. Kevin had a daughter already (Riley), and the two wanted another child. By August of that year, they were expecting their first child together. The pregnancy was moving along nicely and they went to Dr. Foulk’s office for a 20-week anatomy scan. The technician called the doctor into the room for a second look, and Dr. Foulk proceeded to tell the couple that the scan is showing some abnormalities. He told the couple their baby had congenital diaphragmatic hernia (CDH). Not knowing what this meant exactly, they were referred to Ohio State University Maternal Fetal Medicine immediately, which told them it, was probably not good.

CDH is a birth defect (an abnormality that occurs before birth) that develops as a fetus is forming in the mother’s uterus. A congenital diaphragmatic hernia (CDH) occurs when the diaphragm does not form properly. The diaphragm is a thin sheet of muscle that separates the abdomen from the chest. The diaphragm is an important muscle for breathing. When there is an opening in the diaphragm, organs that are normally in the abdomen can be pushed (herniated) through the opening into the chest. Currently little is known about why this birth defect occurs.

The couple followed up on the doctor’s referral. At that appointment, the day before Thanksgiving, the family was given the news that their unborn child did indeed have CDH and had a zero to 20 percent chance of survival once born. To throw more stress into the situation, the doctor also said that they only had one week to decide whether or not they wanted to terminate the pregnancy.

With that news, the couple did the only thing that they new to do, they prayed. They met with their pastor at Emanuel Lutheran Church that same day and they came to a conclusion fairly quickly.

“There wasn’t an option for us to do anything but have this child,” Gretchen said.

So they prepared, they continued to pray, and they named him Cayden. They had other names in mind, but after what they were about to face, this name seemed more fitting for their unborn son because Cayden means “fighter.”

The pregnancy was fairly normal despite the fact that the couple had no idea what the outcome of delivery would hold for them and their baby boy. They both continued to work until an induction date was set on March 23.

Cayden working with his nurse, Stacy Mahley, LPN and his occupational therapy assistant, Lindsay Martin, OTA

Cayden working with his nurse, Stacy Mahley, LPN and his occupational therapy assistant, Lindsay Martin, OTA

“Everyone was wonderful,” Gretchen recalls. “I did not want a shower because if things did not go well and we did not come home with a child, I would not be able to cope with that. Instead, Many people showered us with gift cards, gas cards, and money to prepare for the hospital cost that we were about to endure.”

“Dr. Foulk’s office even had t-shirts made to honor the journey we were about to embark upon. The t-shirts said, ‘Cayden’s Crew.’”

The hospital was very prepared and they tried to prepare Kevin and Gretchen.

“They told me not to plan on holding him or really even seeing him because they had to get him stabilized as quickly as possible. We planned for Kevin to go with Cayden too,” Gretchen said.

Knowing that Cayden would not breath on his own once he was born, they had machines and a team of 30 people in the room to breath life into him as soon as possible and give him a fighting chance. On March 23, 2015 at 9:10 p.m. Cayden made his entrance with a fairly normal delivery. That was the last “normal” act that would happen in the Jolliff’s world.

He was whisked away to Nationwide Children’s Hospital with Kevin by his side. His first few days were critical. Several surgeries were performed and a few times they were told the surgeries could end his life, or they could work. Every effort to save him was a gamble.

“We had to try,” Kevin said, “because the alternative was not an option. We had Cayden baptized and we came to peace with whatever outcome we were given,” he added.

Cayden fought. And fought. And fought. For two and a half years, Cayden lived in Nationwide Children’s Hospital and the Jolliff family lived in the Ronald McDonald House, commuting to their jobs and trying to carry on in between the ups and downs that was now their life. Through it all, the doctors and nurses became their family.

Finally, in July of 2017, Cayden was released from the hospital to come home with his family.

“As much as we wanted him to come home, we were afraid to bring him home,” Kevin recalls. “There were so many tubes, machines, and wires.”

Today, at three and a half years old, Cayden is still fighting. Cognitively he is doing very well. He understands and responds to conversation.

He has a wonderful team of professionals – nurses, physical therapists, occupational therapists, and speech therapists that help him achieve new goals – and he is doing just that. He smiles and has a very happy disposition, which makes him a joy for his family and medical team. Cayden also receives services from the Marion County Board of Developmental Disabilities and will likely need support for many years to come.

Cayden has become a celebrity with his own Facebook page with over 3,000 followers (follow his story by searching Cayden’s Journey).

Gretchen said, “We still worry every day, but we also celebrate every milestone because each is a precious gift.”

Story submitted by Marion County Board of Developmental Disabilities.

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