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Ethan spent his first 100 days at Cincinnati Children's undergoing two surgeries that saved his life.

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Today, Ethan is thriving.

Ethan's story was featured during the 2008 Cincinnati Cares for Kids Radiothon. Listen as Stephany and Mike describe their family's experience.

Ethan Wilson was born with a hole in his diaphragm, a rare condition called congenital diaphragmatic hernia (CDH). Because of the hole, his stomach, spleen and intestines floated up into his chest cavity and kept his lungs from developing properly. Ethan spent his first 100 days at Cincinnati Children’s undergoing two life-saving surgeries. Today, he is an active toddler who spends most of his time trying to be just like his big brother, Jaiden.

Ethan was diagnosed with CDH before his birth during a routine ultrasound. The news came as a shock to his parents, Stephany and Mike, who were expecting only to find out the gender of their baby that day. Stephany had brought her parents along and Mike had his mother with him. The whole family was anxious to find out if Jaiden, their 5-year-old son, was going to have a little brother or a sister. Instead, they learned that their unborn son had a hole in his diaphragm and that he may not survive. “I was an emotional wreck,” Mike says. “I just sat with my mom trying to figure everything out. I didn’t know what to do…I didn’t know if my child would live or die.”

Expert care close to home

Ethan’s condition, CDH, is very serious, complex and rare. It only occurs in about one in every 2,200 births. Most of these babies will have another birth defect, often of the heart, and one or both lungs are usually underdeveloped, which leads to breathing difficulties. After Stephany’s doctor broke the news to the family, he urged them to see the specialists at Cincinnati Children’s. “My doctor said he had only seen this condition two other times. He told us to go straight to Cincinnati Children’s, because they’d know what to do,” Stephany says.

Cincinnati Children’s is home to the Fetal Care Center of Cincinnati, one of the nation’s most highly respected centers for the care of mothers and infants in high-risk pregnancies. The center is led by Timothy M. Crombleholme, MD, an internationally renowned expert in the field of fetal medicine and surgery.

While most medical centers across the country care for only three to eight of these cases each year, the Congenital Diaphragmatic Hernia Team at Cincinnati Children's sees about 20 to 30 kids with CDH and has extensive training in evaluating and treating this condition.

The same day that Ethan was diagnosed, Stephany and Mike were contacted by Cincinnati Children’s to begin scheduling tests to determine the extent of Ethan’s condition. They met with a team of experts who helped them understand their son’s diagnosis and what they should expect in the coming months.

“A team of specialists monitored my pregnancy and Ethan’s condition every step of the way,” Stephany says. “They made sure we had the most innovative, technologically advanced care possible. And they were there for us, when we were so scared, offering the emotional support we needed. We knew we were in good hands,” she says.

Ethan's first 100 days

Stephany was seen by her high-risk obstetrician every week after learning of Ethan’s condition. In January 2007, at about 30 weeks along, she started having contractions and was hospitalized for the weekend. Her doctors were able to stop the contractions then, but Ethan still arrived early. On a chilly February day, a collaborative 15-member medical team, led by the Cincinnati Children’s neonatal care specialists, brought Ethan into the world. Ethan was born at University Hospital at 35 weeks.

“My little baby…he tried to cry and to take his first breath, but he just squeaked a little. He couldn’t cry or get a deep breath because his lungs hadn’t developed properly,” Stephany remembers.

Ethan was put on a ventilator to help him breathe and transferred to the Regional Center for Newborn Intensive Care (RCNIC) at Cincinnati Children’s. The RCNIC is the referral center for our area’s most fragile infants. Infants are transferred to the RCNIC when their problems are too complex to be treated at their birth hospital.

Ethan needed surgery to repair the hole in his diaphragm. Together with Ethan’s family, Dr. Crombleholme, the CDH Team and Ethan’s team of specialists from neonatology, pediatric surgery and respiratory therapy, decided that it would be best to wait on surgery, to give Ethan’s little body time to stabilize.

One month after his birth, Ethan had his first surgery. “Ethan’s doctors were watching him closely, waiting for his heart and pulmonary arterial pressure to stabilize so they could move forward with surgery,” Stephany says. “They called us at 7 pm one evening and said, ‘he’s ready’. The next morning he was in surgery.”

Surgeons were able to go in and reposition Ethan’s intestines and stomach and stitch up the hole in his diaphragm. The first surgery was a success. However, like many children with CDH, Ethan had severe gastroesophageal reflux disease (GERD), where acids and fluids from the stomach move up into the esophagus and can cause heartburn, vomiting, feeding problems or lung problems. Ethan needed another surgery to correct this condition.

“Ethan didn’t want to take any nourishment by mouth because he learned very quickly that it hurt him to eat,” Stephany says.

He had a second surgery during which a piece of muscle was wrapped around the base of the esophagus where it meets the stomach as an anti-reflux valve. Ethan also had a g-tube (a hole that leads directly to the stomach) inserted so he could receive nourishment until he learned to eat by mouth. After two surgeries, numerous tests and procedures and 100 days at Cincinnati Children’s, Ethan was finally ready to go home.

Ethan Today

“It’s hard to believe that a little more than a year ago we weren’t sure if our baby would survive. Thanks to Cincinnati Children’s, Ethan is alive and a thriving 1-year-old,” Mike says.

Today, with the help of speech therapists at Cincinnati Children’s, Ethan is learning to drink from a cup and eat small amounts by mouth. “He’s learning to trust that it isn’t going to hurt anymore,” Stephany says. They are hopeful that Ethan will be off the g-tube by his second birthday.

One of Ethan’s lungs is still underdeveloped, he still takes heart medication and sees a cardiologist. But he has recently gotten the okay to wait until November for a re-check – a very promising sign. “He’s just a normal, healthy little boy now,” Mike says. “He loves to play and laugh…and he loves his big brother, Jaiden, more than anything else. Every time Jaiden walks into a room, Ethan grins from ear to ear. It’s just heartwarming, it really is,” Mike says.