WINDSOR, Colo. — The fourth pregnancy for Katie and Nate Hoffman did not go quite as planned.
The couple’s second ultrasound showed their baby boy had a significant birth defect.
“They let us know that he had congenital diaphragmatic hernia, or CDH,” Katie Hoffman said. “The diaphragm muscle has a hernia, which is a hole, and they noticed his heart wasn’t in the right place in his chest.”
Their child also had a second birth defect — fetal hydrops, meaning severe swelling, which had to be drained while he was still 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 blessing,” Katie explained.
The couple said Ambrose would be their blessing no matter what happened at birth. Coming in at just 4.5 pounds, their little blessing surprised his family with his tiny will to live.
“His right lung was almost nonexistent on the scans,” Katie said. “We were like, 'OK, God, this is one of those pivotal moments.’”
The first few days were scary. Ambrose underwent surgery to repair the hole in his diaphragm at just two days old.
“I remember the surgeon coming out the door. He just gave us a thumbs up from 20 feet away,” Katie said.
“It was touch and go,” said Dr. Stephanie Bourque, associate medical director at Children’s Hospital Colorado neonatal intensive care unit (NICU). “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 machine 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 frightening.”
“Literally all of his blood is being taken out of his body and oxygenated by a machine and pumped back into him,” Katie said.
Days at Children’s Hospital turned into weeks, and weeks turned into months. And yet, there was still this tiny little guy with a will to one day go home.
“Ambrose is a really special kid,” Bourque said.
Eight months and a half-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 giant yard sign that said, "Welcome home Ambrose." And they were all lining our street cheering as we came home. It was just the most special thing to get to bring him home.”
Ambrose is now 2.5-years-old and keeping up with his three older siblings – Milo, 9, Felix, 6, and Tealy, 4.
"The amount of oxygen that he requires is tremendously less than when we brought him home,” Nate said. “I’m just staring at his face, this is a beautiful face, without any apparatus — that was pretty special.”
“He’s talking, he’s running around, he’s being massively ornery,” Katie said.
Ambrose is still on a feeding tube and requires a little oxygen, but doctors are confident he will come off both with time.
“Just such an engaging kid,” Bourque said. “He’s growing and thriving at home with his family. It was a true honor to be able to care for them throughout Ambrose’s hospitalization.”
The feeling is mutual for Katie and Nate.
“That was just really amazing care,” Katie said.
As a family of six, the Hoffmans are taking things one day at a time.
“There’s a certain expectancy for the unexpected,” Katie said. “It was a hard start to life, but what a life. It’s a miracle.”
So far, little Ambrose has made it through nine surgeries in his 2.5 years of life. CDH only affects about three in every 10,000 babies, and only 5% of those have associated fetal hydrops.
The Hoffman’s oldest son, Milo, has spina bifida and is also seen regularly at Children’s Hospital Colorado.
