When Kimberly and Carlos learned their unborn son Ollie had congenital diaphragmatic hernia (CDH), they were devastated.

CDH happens when a hole in the diaphragm allows organs from the abdomen to move up into the chest. This crowds the developing lungs and can make it hard for a baby to breathe after birth. 

The Maryland couple had heard those words before. Two years earlier, they had lost a baby boy, Dominick, after receiving the same diagnosis. 

“At that time, we weren't given options,” says Kimberly. “We weren't told about any of the hospitals that handle CDH.” 

The experience was traumatic, and after losing Dominick, the couple stepped away from trying to grow their family. 

So when Kimberly became pregnant again in 2020, they hoped they wouldn’t face CDH a second time. Then, at the 20-week anatomy scan, their fears became reality. Ollie also had CDH.

This time, however, the family would have something they hadn’t had before: hope. 

Finding hope at CHOP for a CDH diagnosis

Kimberly’s physician referred the family to the Richard D. Wood Jr. Center for Fetal Diagnosis and Treatment (CFDT) at Children's Hospital of Philadelphia (CHOP), the world's most experienced center for treating babies diagnosed before birth with CDH. CHOP cares for more babies with CDH than any other hospital in the world, treating every level of severity. 

At the Center for Fetal Diagnosis and Treatment, a full team of pregnancy, imaging and newborn specialists works together to guide families from diagnosis through delivery, surgery and long-term follow-up care. 

Kimberly and Carlos traveled from their home in Havre de Grace, Maryland, to Philadelphia for a full day of testing and consultations. The difference was immediately apparent. 

“They answered questions we didn't even know we needed to ask,” says Carlos. 

Detailed imaging showed Ollie had the most severe form of CDH, called Type D. CDH is ranked in four levels, from A to D, based on how much of the diaphragm is missing. Ollie had little to no diaphragm. Organs from his abdomen had moved into his chest, compressing his developing lungs and pushing his heart out of position. 

The news was frightening. But unlike their previous experience, the family no longer felt alone. 

“I remember thinking, ‘We actually have a team. We have people we can talk to,’” says Carlos.

The team explained Ollie's condition, discussed the challenges they could expect and outlined a plan for the remainder of the pregnancy. 

“They always had a plan in place about what the next step was going to be,” says Kimberly. 

A carefully coordinated delivery

As the pregnancy progressed, the family relocated to Philadelphia and stayed at Ronald McDonald House to be close to CHOP. 

On April 7, 2021, Ollie was born in CHOP's Garbose Family Special Delivery Unit, a specialized delivery unit designed specifically for babies expected to need expert medical care immediately after birth. 

Because of the severity of Ollie's CDH, everyone knew he would need immediate treatment. He was taken to a nearby stabilization room, where a specialized Newborn Stabilization and Resuscitation Team was waiting. 

“It was almost like a pit crew,” says Carlos. “Everybody knew their role.” 

The carefully choreographed response reassured the family that Ollie was exactly where he needed to be. 

Fighting through an 11-month N/IICU stay

After he was stabilized, Ollie was taken to CHOP's Harriet and Ronald Lassin Newborn/Infant Intensive Care Unit (N/IICU), just a few floors away. 

Just four hours after birth, he was placed on extracorporeal membrane oxygenation (ECMO), a form of life support that temporarily does the work of the heart and lungs. 

“You see all these machines, the big ECMO machine,” says Kimberly. “It was very overwhelming.” 

When Ollie was 20 days old, fetal and pediatric surgeon Emily A. Partridge, MD, PhD, MHS, repaired his CDH while he was still on ECMO, a risky but necessary step because of how sick he was. There wasn’t enough room in Ollie’s abdomen for the organs that had moved into his chest before birth, so Dr. Partridge temporarily placed them in a silo, a protective pouch attached to the body. The silo gave Ollie’s abdomen time to gradually make room for the organs. Once there was enough space, the organs would be moved back into his abdomen and the abdominal wall would be closed.  

Seven days after the silo was placed, Ollie successfully came off ECMO on the first attempt. 

Thirty-four days after his birth, Kimberly and Carlos were able to hold him for the first time during Mother's Day weekend.

Celebrating every milestone

Ollie's recovery was complicated. He battled severe pulmonary hypertension, a condition that causes high blood pressure in the blood vessels of the lungs, along with infections and other medical challenges as doctors worked to stabilize him and give his lungs time to grow. 

There were moments when progress seemed frustratingly slow. Several months into Ollie's hospitalization, his care team adjusted his treatment plan. Slowly, Ollie began improving.

He grew stronger and began physical, occupational and feeding therapy. The nurses celebrated each win right alongside the family, some even coming by on their days off to witness major milestones because they had become so invested in his journey.

“They became somewhat of a family to us,” says Kimberly.  

After 11 months in the N/IICU, Ollie was finally ready to leave the hospital. In the weeks leading up to discharge, the care team helped prepare Kimberly and Carlos to manage Ollie’s complex medical needs at home. They received extensive training on his medications, respiratory equipment and feeding tube, and worked closely with the team to create a plan for the transition home.  

Then, after nearly a year in the hospital, they received the news they had been waiting for: Ollie could go home. 

A future full of possibilities

Ollie is now 5 years old. 

He still receives care through CHOP's Pulmonary Hypoplasia Program, where specialists in pulmonology, surgery, nutrition, speech and social work continue to monitor his progress. He also continues to be followed by cardiology for pulmonary hypertension, which has improved significantly but still requires monitoring. 

He still has a feeding tube and participates in therapy, but the little boy his parents once feared they might lose is now busy creating new memories every day. 

He recently finished pre-K. He loves Bluey. He enjoys playgrounds, swimming, playing outside and spending time with friends. 

Many of Ollie's developmental milestones came later than expected. He didn't begin walking until he was around 4 years old, and he continues to make progress with speech, feeding and other skills. 

“Even at 5 years old, we're still experiencing all these firsts,” says Carlos. 

And his parents cherish every one of them. 

“Every single day, I am in awe of him,” says Kimberly. “He has been through so much more than probably some adults will ever go through, and he just smiles through it all.” 

Turning pain into purpose

Today, Kimberly and Carlos spend time supporting other families facing a CDH diagnosis through online support groups and social media communities. They want other families to know that seeking expert opinions and specialized care can make a difference. 

“What if we're that one bit of information somebody needed?” says Carlos. 

When they connect with newly diagnosed families, they share the same message that changed their own path years ago: There is hope.