Ambrose: Beating Congenital Diaphragmatic Hernia (CDH), and More

Ambrose went through so much in his first year of life that being born during a pandemic is almost a footnote in his story. He faced multiple serious medical issues simultaneously for the first 8 months of his life. He had complex, life-saving surgeries in multiple states. Machines helped him eat and breathe for months.

Through it all, his family did everything they could to support him and a team of our experts were invested in helping him thrive.

A congenital diaphragmatic hernia diagnosis

Before birth, Ambrose was diagnosed with congenital diaphragmatic hernia (CDH), a serious condition in which a hole in his diaphragm allowed organs into his chest cavity, which stunted his lung growth. Additionally, he developed fetal hydrops, which caused excess fluid buildup in his organs and tissues and can be life-threatening. It’s very rare for a baby to have both conditions.

He needed surgery to place a shunt in his chest to drain the fluid, but the procedure could trigger early delivery. It required the expertise of our Colorado Fetal Care Center team. Ambrose’s parents, Katie and Nate, decided the surgery was necessary and were comforted by our stellar outcomes. Their older son, Milo, also received care 6 years earlier from our Center for myelomeningocele (MMC).

Ambrose’s surgery went so well and drained the fluid so quickly that our surgeons were high fiving. Everyone was hoping that Katie would remain pregnant for as long as possible to help Ambrose grow and our team continued to monitor their progress.

Extracorporeal membrane oxygenation (ECMO) shortly after birth

33 weeks into Katie’s pregnancy, Ambrose decided he was ready to meet the world. Katie’s water broke at home in Windsor, she boarded a helicopter to our Center due to the severity of Ambrose’s CDH and was soon ready to deliver Ambrose with 40 of our experts there to care for him the moment he was born — and they did.

Per Katie and Nate’s request, we had a chaplain waiting to baptize Ambrose right after birth and then our team got busy saving his life. Because Ambrose’s lungs were so small, he required extracorporeal membrane oxygenation (ECMO), an advanced treatment available at only a few centers in the nation that added oxygen to his blood while his lungs grew. He was barely big enough for ECMO, but our experts have the experience to deal with these rare situations. We placed Ambrose on ECMO within an hour of his birth. At 2 days old, he had surgery in our Level IV Neonatal Intensive Care Unit (NICU) to repair his CDH.

An unexpected setback from tracheobronchomalacia

After 9 days, he was able to come off ECMO and needed less and less breathing support over the next couple months. Ambrose was making steady progress and just when his parents were starting to plan to take him home, he was diagnosed with tracheobronchomalacia. The cartilage in his airway was not firm enough and when he got upset, he struggled to breathe.

Ambrose had successful surgery to treat tracheobronchomalacia. He went home after more than 8 months of hospitalization — a time when family members had spent little to no time with this little fighter due to the coronavirus pandemic.

Opening hearts and growing up

Maybe more than anything, Katie and Nate appreciated how much our team cared about Ambrose. Several of his doctors checked in on him after hours and after he went home, and our doctors continue to ask Katie and Nate for updates. One of his neonatologists came in on his day off to a unit he didn’t work in escort Ambrose to his procedure. Katie says several providers “took their doctor hats off,” talked to her mom-to-mom and hugged her while she cried.

“They don’t have to have their hearts open for these kids, but they do,” says Katie. “They give out their cell phone numbers, ask for updates and visit often. It makes all the difference in the world.”

Ambrose is 2, has started talking and walking, is getting ready to run and is enjoying being home with his three siblings.

“I’m not sure Ambrose would have made it if we didn’t live near Children’s Colorado,” says Katie. “We have so much to be grateful for with them.”