Trisha and Dirk knew their son would have a tough start in life. He was diagnosed with a life-threatening condition before he was even born. Thanks to the advanced surgery techniques at Cincinnati Children’s, today Ethan is a healthy, happy 2-year-old boy.
Ethan stands at his front door with a big grin, bright blue eyes, disheveled red hair, just waiting to make a new friend. Once inside, he’s quick to point out he’s missing his left sock, but he doesn’t let that distract him from his duties as a host. Once he’s shown you his toys, he’s curious about what you’ve got in your purse, your wallet, your pockets, anything you’ve got.
His mom, Trisha, stops him quickly from getting into guests’ belongings, but it isn’t long before Ethan sneaks out of the room, returning moments later with Trisha’s driver’s license and some coupons from her purse.
“You’d never know now what he went through,” she says.
When Trisha was 30 weeks pregnant with Ethan, her and Dirk’s first child, she went in for what the couple thought was a routine ultrasound. It was there she got the news that something was wrong with her baby. A follow-up ultrasound would confirm her baby had Congenital Diaphragmatic Hernia (CDH), a life-threatening condition. CDH is a defect of the diaphragm that allows abdominal organs to float up into the chest cavity. This limits the space for the lungs to develop properly. In some cases, babies who are born with the condition do not survive because of lack of lung function.
“I was just in shock,” Trisha says. “I can’t tell you what they told me that day. It’s all a blur.”
When Trisha returned home, she turned to the internet to learn more. “I just kept reading about all of these kids with CDH, and it was scary to see just how bad it is. My husband told me to turn off the computer and unplug it or he’d take it to work with him so I couldn’t read more about it.”
“We all want to know that our kids are going to be healthy and normal, but when I found out that Ethan might have problems I worried about how severe his case might be,” Dirk says. “However, I tried not to let the fear get to me. I didn’t want to be afraid and I just kept telling myself that everything was going to be alright. I think I had to keep telling myself that, otherwise the fear would have overtaken me.”
After the diagnosis, the couple found comfort talking with the doctors at Cincinnati Children’s about their son’s condition.
“They were very thorough in their explanation of his condition and helped us know what to expect,” says Dirk.
“We knew we weren’t going to have a normal delivery,” Trisha says. “I knew I wouldn’t be able to hold him, and that we weren’t going to take him home in a couple of days. We knew exactly what was going to happen.”
“I remember one of the doctors saying when he outlined the probable long-term prognosis that ‘This is not a kid that is going to have to stand on the sidelines. He should be able to get everything that he wants out of life.’”
Even though they knew the birth of their child wouldn’t be like most other births, there was still no preparing for Ethan’s early arrival. On April 22, 2008, Trisha began having extreme abdominal pain, and Ethan was born by an emergency cesarean-section.
Soon after he was delivered, Ethan was transported to Cincinnati Children’s. One of Ethan’s kidneys and his intestines, bowel and spleen were in his chest and needed to be moved. At just 10 days old, Ethan had surgery to correct his condition.
“I was worried because he was so young, but everything went great,” Trisha said. “He was in the hospital for six weeks, and when he was released he had a feeding tube, but he was doing great.”
“Ethan’s doctors were fantastic in relaying information to us and helping us get through his hospital stay,” Dirk says.
The family said they were also comforted by the knowledgeable nurses during their stay. “They would call at night or if he went in for a test and we weren’t there,” Trisha says. “It seemed like every nurse knew exactly what was going on with him. They didn’t have to read it off of his chart, they just knew.”
A Bright Future
“He’s doing great and he is big. A lot of kids born with CDH are small, but he’s in the 99th percentile for height,” Trisha said. “I worry that later on he’ll have asthma or high blood pressure, but right now he’s very healthy.”
Ethan is growing and thriving. His care team at Cincinnati Children’s will keep careful watch for future complications children with CDH can face, including neurological problems, pulmonary hypertension, chronic lung diseases, reactive airway disease, hearing loss, seizures and developmental delay. Luckily, Ethan has shown no signs of any of these.
Ethan still comes to Cincinnati Children’s frequently, though his visits are becoming less and less frequent as he continues to grow and develop normally. At first he visited the medical center every month, then every three months, then every six months. Now Ethan only needs to be seen once a year.
Now 2, Ethan enjoys helping his mom around the house. He’s strong enough to roll a full-size vacuum through the house, and pick up and dump out a box of at least 15 toys. And he’s got enough lung capacity to sing his favorite songs.
Dirk and Trisha say they are so grateful to the medical center for saving Ethan’s life.
“I feel blessed to have a facility of the caliber of Cincinnati Children's so close to home. I am always confident that my child is getting some of the best care available,” Dirk says.
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