Boy beating odds after two rare birth defects, slight chance of survival

WINDSOR, Colo. — Katie and Nate Hoffman’s fourth pregnancy didn’t 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, or CDH,” Katie Hoffman said. “The diaphragm muscle has a hernia, which is a hole, and they noticed his heart was in the wrong place in his chest.”

Their child also had a second birth defect – fetal hydrops, meaning severe swelling, which had to be drained while still in the womb.

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

So the parents prepared their hearts for all that was to follow.

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

The couple said Ambrose would be their blessing no matter what happened at birth. At just 4.5 pounds, their little blessing surprised her family with her tiny will to live.

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

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

“I remember the surgeon coming out of the door. He just gave us a nudge from 20 feet away,” Katie said.

“It was touch and go,” said Dr. Stephanie Bourque, associate medical director of the neonatal intensive care unit (NICU) at Children’s Hospital Colorado. “The severity of his illness was high.”

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

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

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

Ambroise Benoit

Hoffmann family

Days at the children’s hospital turned into weeks and weeks into months. And yet, there was still this tiny little guy with the will to return home one day.

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

Eight months and half a dozen operations later, Ambrose has returned home.

“252 days,” Katie said. “Absolutely the best day of our lives. When we turned down our street, there were 40 people who had all made signs, and they had balloons and a giant sign on the yard that said, ‘Welcome Home Ambrose.” And they were all lined up on our street cheering when we got home. It was just the most special thing to get to bring him home.

Ambrose is now 2.5 and follows his three older siblings – Milo, 9, Felix, 6 and Tealy, 4.

Ambroise Benoit

Hoffmann family

“The amount of oxygen he needs is considerably less than when we brought him home,” Nate said. “I just look at his face, it’s a beautiful face, without any devices – it was quite special.”

“He talks, he runs around, he’s massively obnoxious,” Katie said.

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

“Just such an engaging kid,” Bourque said. “He is growing and thriving at home with his family. It was a real honor to be able to care for them throughout Ambrose’s hospitalization.

The feeling is mutual for Katie and Nate.

“It was really amazing care,” Katie said.

As a family of six, the Hoffmans take things one day at a time.

“There’s a certain expectation for the unexpected,” Katie said. “It was a difficult start to life, but what a life. It’s a miracle.”

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

The Hoffmans’ eldest son, Milo, has spina bifida and is also seen regularly at Colorado Children’s Hospital.

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