From Struggle to Strength: Ross’s Recovery from a Congenital Diaphragmatic Hernia at Oklahoma Children’s Hospital OU Health

Sara and Jon Helms found out they were expecting their first baby during a particularly busy and stressful period in their lives. Sara’s father was in hospice, so they had moved to Oklahoma to be close by and make his last days as comfortable as possible. Sadly, Sara’s father passed away in September 2015.

In January 2016, Jon left the military, and within just a few days, Sara felt that something wasn’t right with her pregnancy. She went to the emergency room at the local hospital, and on January 21, at just 29 weeks pregnant, Sara gave birth to a tiny baby boy named Ross.

Ross was born with congenital diaphragmatic hernia, a serious condition that requires surgical repair. Tiny Ross was immediately intubated and transferred to Oklahoma Children’s Hospital OU Health to receive the highly specialized care he needed.

What is a Diaphragmatic Hernia?

A diaphragmatic hernia is a rare condition that occurs during a baby’s development in the womb. In this condition, the diaphragm — the muscle that separates the chest cavity from the abdomen — doesn’t fully develop, allowing organs like the stomach, small intestine, spleen, part or the whole of the liver, and the kidney to occupy part of the chest cavity. This condition is usually treated with surgery to repair the opening and reposition the organs.

Congenital Diaphragmatic Hernia (CDH) typically affects only one side of the diaphragm, with the left side being more commonly affected. This can lead to underdeveloped lung tissue and blood vessels in the area. It’s unclear whether the diaphragmatic hernia causes these developmental issues or if it’s the other way around.

Approximately 40% of babies with CDH have additional health concerns, and the risk of CDH increases if a parent or sibling has the condition.

Severe breathing problems usually appear shortly after birth. These issues arise due to the poor movement of the diaphragm muscle and the crowding of lung tissue. Additionally, underdeveloped lung tissue and blood vessels contribute to breathing and oxygenation difficulties.

The first few days after Ross’s birth were filled with anxiety and uncertainty for the new parents. Thankfully, a childhood friend of Sara’s who worked on the neonatal flight team at Oklahoma Children’s Hospital was able to comfort and reassure them that Ross was in the best hands possible.

Surgical Repair

Ross was only weeks old when he underwent surgery in March 2016 to repair the diaphragmatic hernia.

Diaphragmatic hernia repair surgery is performed while a child is under general anesthesia. Typically, the surgeon makes an incision in the abdomen just below the lower ribs to access the organs. The surgeon then gently moves these organs into their correct positions through the opening in the diaphragm and into the abdominal cavity.

For less severe cases, the procedure can be done using smaller incisions in the chest. A small video camera, called a thoracoscope, is inserted through one of these incisions, allowing the surgeon to see inside the chest. Surgical instruments are then used through the other incisions to repair the hole in the diaphragm.

In both types of surgery, the surgeon repairs the hole in the diaphragm. If the hole is small, it can be closed with stitches. If it’s larger, an artificial patch is used to cover the hole.

All of Ross’s organs were put back in the right place, and his left lung opened fully. However, even after the surgery, he struggled to breathe on his own due to being born so prematurely. He needed breathing tubes to help him until his lungs were stronger.

OU Health neonatologist and NICU Medical Director Dr. Patricia Williams, M.D., associate professor in the Department of Pediatrics at the University of Oklahoma College of Medicine, provided care for Ross during his stay in the NICU.

“Ross’s case was complex as not only is it unusual to be a preterm infant, but it's even more unusual to be a preterm infant with a surgical problem like the diaphragmatic hernia,” said Dr. Williams. “In Ross’s case, because he was so small and premature, we had to wait until he was bigger and older to do his surgery. So, it’s a testament to the hard work of the team caring for him day to day during that time that he was able to survive until he was big enough for the surgical repair to occur.”

A Long Recovery

Over the next couple of months, the breathing tube was periodically removed to see if Ross could breathe on his own, but his lungs weren’t ready. The breathing tube would be put back in, and a few days or weeks later the care team would try again when they felt he was stronger.

Preterm babies often experience lung problems because their lungs aren’t fully developed at birth. There are several reasons why they have lung problems:

Lack of Surfactant

Surfactant is a crucial substance that helps keep the tiny air sacs in the lungs open. It usually starts being produced around week 30 of pregnancy. Without enough surfactant, preterm babies can develop respiratory distress syndrome (RDS), making it hard for them to expand their lungs and breathe properly.

Underdeveloped Lung Tissue

The lungs of preterm babies are still growing, which means they are more fragile and less capable of handling the stress of breathing outside the womb. This can lead to conditions like bronchopulmonary dysplasia (BPD), where the lungs become irritated and do not develop normally.

Immature Immune System

Preterm babies have less developed immune systems, making them more prone to infections like pneumonia. These infections can further complicate lung development and function.

“Ross not only experienced many of the typical lung issues that we can see in premature infants, such as surfactant deficiency, bronchopulmonary dysplasia, and apnea of prematurity, but he also needed to deal with the lung development issues that occur as a result of his diaphragmatic hernia,” said Dr. Williams. “Both of those medical issues combined meant that Ross was dependent on the breathing tube and the ventilator to support him for much longer time.”

Meanwhile, Sara was struggling with depression. Not only was she exhausted, but she was grieving over the loss of her father and longed to take her baby home.

“It got to the stage where I knew I needed a break. I couldn’t do it anymore,” explained Sara. “The doctors and nurses never, ever made me feel like I was doing something wrong for needing to take a break. I was there from sunup to sundown every day but when I needed time out to regroup, they understood. It was so comforting to know my baby was in the best care possible.”

Taking Ross Home

By May 2016, when Ross was five months old, it was decided that he would benefit from a tracheotomy.

“Ross had his surgery, and everything went smoothly. He was still a bit drowsy afterward, but I felt a sense of relief and hope,” said Sara. “Jon and I decided to go home and start getting things ready, knowing that we were getting closer to bringing him home.

As we were getting ready to leave, Ross woke up and looked directly at us. It was such a heartwarming moment, and I felt a strong connection with him. Seeing his full face without the intubation tubes for the first time in a while made everything feel lighter and better.”

Before Sara could take Ross home, she needed to learn how to care for and change his tracheotomy tube. Sara was trained by the nurses, and prior to discharge, she took on all care for Ross.

“In the time between me finally being able to take care of Ross and our discharge date, the nurses would just give me the day-to-day supplies I needed, and I would take care of him,” explained Sara. “I would change his trach tubes, I would put all the bandages where they needed to go to make sure everything was clean, I would feed him and change diapers. I wanted to show everybody that I was ready to take care of my baby at home.”

Thriving and Growing

Despite the difficult start he had, Ross, now 8 years old, is thriving. Sara explained that Ross is a little bit smaller, but he has the same energy and spirit as any other child his age. She is incredibly grateful for Oklahoma Children’s Hospital and the care Ross was given.

“Oklahoma Children’s Hospital did so much for us,” she said, choking back tears. “It was a tough time, and I remember walking down the hallways and thinking that we’d get through it, and I would be able to reassure others that they’d make it through with the care their kids would get here. The support we received from everyone around us was incredible. Whether they knew it or not, they helped us through the toughest times.”

“The NICU at Oklahoma Children's Hospital provides a really unique environment,” said Dr. Williams. “Not only is it a group of dedicated neonatologists taking care of small preterm babies, but we also have all the other sub-specialty support including surgeons, physicians, dietitians, pharmacists, and wonderful bedside nurses and practitioners; each one dedicated to the care of small babies and children.”

Whether you’re preparing for delivery with a high-risk pregnancy, or you find out that your newborn needs to stay in the hospital for special care following birth, you want top-quality neonatal experts and services in a supportive, family-friendly atmosphere.

Oklahoma Children’s Hospital provides expert multidisciplinary care for the most complex neonatal cases. Learn more about our services and treatment, request an appointment or get a second opinion. Call (405) 271-KIDS for more information.