Looking back on it, Heather can recall many painful moments leading up to the birth of her son. There was the moment at her 20-week ultrasound when the technician detected an abnormality with the baby. There was the moment when her unborn son was diagnosed was a severe birth defect affecting his lungs and diaphragm. And then there was the moment when Heather was told her baby had a 4 percent chance of survival.
“There were a lot of tears that day,” recalls Heather.
But there were also moments of hope for Heather and her husband, Aaron. After their baby was diagnosed with a congenital diaphragmatic hernia (CDH), Heather was referred to Children’s Hospital Colorado, which boasts a renowned team of fetal and pediatric specialists.
“We were comforted knowing that they deal with cases from all around the country, says Aaron. “We didn’t have any hope until we came to Children’s Hospital Colorado. They gave us a chance.”
CDH occurs when a fetus’ diaphragm doesn’t develop properly. In severe cases, the condition can cause the organs to move into the baby’s chest cavity, preventing lung growth and causing other serious health issues.
“We knew it was going to be a tough road, but we felt like our son had the best shot for survival at Children’s Colorado,” says Heather.
'I'm going to fight'
Heather gave birth to her son on Aug. 16, 2011, at University Hospital surrounded by a team of doctors, nurses and other specialists. The new parents named their son Caleb just before he was whisked away.
“I remember he made this little squawk just before they took him away,” recalls Aaron. “They said he wouldn’t make a sound, so that was very memorable. It felt like he was saying, ‘I’m going to fight.’”
At just a few hours old, Caleb was transported via ambulance to Children’s Colorado, where he could get the specialty care he required. Aaron was able to go with his newborn son, but Heather had to stay behind at University Hospital to recover.
“That was one of the hardest moments of all,” says Heather. “We knew that first 24 to 48 hours would be the most precarious. Because I couldn’t be there, the doctors at Children’s Colorado called me throughout the night with updates.”
At 3 days old, Caleb had his first surgery to correct the diaphragmatic hernia. The surgery went well, but Caleb’s future was still uncertain. He spent more than a year in the Neonatal Intensive Care Unit at Children’s Colorado, where he underwent several additional surgeries.
“We literally lived in the hospital for over a year,” says Heather. “We celebrated his first Christmas and his first birthday there. His nurses all pitched in and gave him an amazing first birthday party.”
Home at last
A few weeks after his first birthday, Caleb was able to go home for the first time. It was a nerve-wracking experience for his parents – particularly since Caleb was still connected to a tracheotomy, ventilator and feeding tube and required round-the-clock care.
“Thankfully, the Children’s Colorado team did a great job of teaching us how to care for Caleb, so when we got home we felt confident that we could handle it,” says Aaron.
Just before Caleb’s second birthday, he had his tracheotomy tube removed. For the first time in his life, Caleb was using his own lungs to breathe.
The family still had a long road ahead. Because Caleb had spent so long in a hospital crib connected to tubes, he had some developmental delays. With the help of multiple therapies, Caleb soon learned to walk while still connected to his oxygen tank and feeding tubes.
Caleb also had to learn to eat normally, which can be extremely challenging for children who have been on a feeding tube. But with a lot of hard work, Caleb had his feeding tube removed at age 4 and now eats everything by mouth.
Although he still requires an oxygen tank, Caleb, now age 6, is doing better than his parents ever could have imagined. He loves reading and singing, and he just started Kindergarten with children his age. Aaron and Heather say they are extremely grateful to Children’s Colorado.
“They gave Caleb an opportunity for life,” says Aaron.
Adds Heather: “All along, we were just focused on his survival. Now he’s basically a normal 6 year old.”
She pauses, reflecting on all the moments that have transpired since those painful moments at the beginning of Caleb’s journey.
“Now, we can start to dream bigger,” she says.