Young despite two rare birth defects despite low chances of survival

WINDSOR, Colorado – The fourth pregnancy for Katie and Nate Hoffman didn’t quite go as planned.

The couple’s second ultrasound showed their baby boy had a significant birth defect.

“They let us know he had a congenital diaphragmatic hernia (CDH),” Katie Hoffman said. “The diaphragm muscle has a hernia, so there’s a hole, and they noticed that his heart wasn’t in the right place in his chest.”

Her child also had a second birth defect – hydrops fetalis, which meant severe swelling that had to be removed in the womb.

“We went from one life-threatening birth defect to two,” Katie said.

So the parents prepared their hearts for whatever was to come next.

“We named him Ambrose Benedict, which means eternal blessings,” Katie explained.

The couple said Ambrose was their blessing no matter what happened at the birth. Weighing only 4.5 pounds, her little blessing surprised his family with his low will to live.

Hoffman family

“His right lung was almost non-existent on the scans,” Katie said. “We were like, ‘Okay, God, this is one of those defining moments.'”

The first days were scary. Ambrose underwent surgery when he was just two days old to repair the hole in his diaphragm.

“I remember the surgeon walking out the door. He just gave us a thumbs up from 20 feet away,” Katie said.

“It was a breeze,” said Dr. Stephanie Bourque, Associate Medical Director at the Neonatal Intensive Care Unit (NICU) at Children’s Hospital Colorado. “His disease severity was high.”

Bourque and an army of nurses and doctors at Children’s worked tirelessly to keep Ambrose alive, even putting him on a life support device called an ECMO.

“They had to make the decision within 15 minutes,” Nate said. “I can see him and he doesn’t look like he’s alive. So it’s really scary.”

“Quite literally, all of his blood is taken by a machine, oxygenated, and pumped back into him,” Katie said.

Hoffman family

Days in the children’s hospital turned into weeks and weeks turned into months. And yet there was still this tiny little fella who had the will to go home one day.

“Ambrose is a very special kid,” said Bourque.

Eight months and half a dozen surgeries later, Ambrose went home.

“252 days,” Katie said. “Absolutely the best day of our lives. When we turned onto our street there were 40 people who had all made signs and they had balloons and a huge garden sign that said “Welcome Home Ambrose.” And they all stood on our street cheering as we got home came. It was just special to be able to bring him home.”

Ambrose is now 2.5 years old and can keep up with his three older siblings – Milo, 9, Felix, 6 and Tealy, 4.

Hoffman family

“The amount of oxygen he needs is tremendously less than it was when we brought him home,” Nate said. “I just stare at his face, it’s a beautiful face, without any apparatus – that was very special.”

“He talks, he runs around, he’s extremely vicious,” Katie said.

Ambrose is still on a feeding tube and needs some oxygen, but doctors are confident he will wean both in time.

“Just such a dedicated kid,” Bourque said. “He grows and thrives at home with his family. It was a true honor to look after her throughout Ambrose’s hospitalization.”

The feeling is mutual for Katie and Nate.

“It was just great tutoring,” Katie said.

As a family of six, the Hoffmans take things from day to day.

“There’s an expectation of the unexpected,” Katie said. “It was a tough start in life, but what a life. It’s a miracle.”

So far, little Ambrose has survived nine surgeries in his 2.5 years of life. CDH affects only about three babies in 10,000, and only 5% of these have associated fetal hydrops.

Hoffman’s oldest son, Milo, has spina bifida and is also seen regularly at Children’s Hospital Colorado.

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