Milynda and Travis Cornford were relieved when their first child was born.
The Wisconsin Dells couple welcomed their son, Heath, on Feb. 22. He was born at Sauk Prairie Hospital.
The couple had lost two pregnancies before Heath’s birth, so when he came out “beautiful with 10 fingers and 10 toes” as Milynda said, they weren’t prepared for what came next.
When Heath was placed on his mother’s stomach for some bonding time, Milynda’s physician, Dr. Todd Schad, an obstetrician and gynecologist at Sauk Prairie Hospital, noticed the infant wasn’t taking deep breaths. As a precaution, Heath was placed in a warmer with some oxygen, and immediately began to “pink up” Schad said. A respiratory therapist was brought in as well.
About 15 minutes after his birth, Travis watched in horror as his newborn son turned purple.
“He had his hand up and he squeezed my finger,” Travis said. “His eyes opened and he looked at me, like as if to say, ‘Dad, something’s wrong.’”
Heath’s birth team began CPR, and made contact with the UW Madison Children’s Hospital. A decision was made to put Heath on an external pacer, which helps regulate heart rhythm. It was a decision that saved his life.
“At the time we didn’t realize how abnormally his heart was functioning,” Schad said. “We just thought he was having difficulty transitioning.” He said once an EKG was performed on the infant, they were able to see just how abnormal Heath’s heart was beating.
Heath was stabilized and taken via ambulance to UW Children’s Hospital in Madison. It was there doctors diagnosed the infant with some form of dilated cardiomyopathy, a disease of the heart muscle that makes it harder for the heart to pump blood to the rest of the body.
As Schad explains it, the structure of Heath’s heart is fine but it’s electrical system is faulty. That means Heath needs a new heart.
Heath was taken via helicopter to Children’s Hospital of Wisconsin in Milwaukee, where he awaiting a transplant.
“His prognosis is very guarded,” said Dr. Ann Punnoose, a heart failure transplant physician at the hospital. “He is still requiring support for breathing and is on medications to help his heart.”
The cause of his condition is still under investigation. Punnoose said their focus right now is trying to get Heath to eat, as babies with heart problems tend to have a more difficult time tolerating formula. “It’s one of his biggest challenges right now,” Punnoose said. “He’s listed for a heart transplant. While he’s waiting, we need to make sure he’s getting nutrition so he can gain the appropriate amount of weight.”
Every night the Cornfords make a 230-mile roundtrip trek from their home to be with their son.
At home, Heath’s Northwoods-style nursery, clad in flannel and Buffalo-plaid, sits empty. It’s a stark contrast from the sterile, tube and monitor surroundings he has at the hospital.
Milynda started a blog to share Heath’s experience with family and friends as a way to keep those closest to them in the loop, but also to give other families going through a similar experience a resource.
“It’s a way for Milynda to deal with some of the stress but it’s something we also wish we had as a resource as new parents going through this,” Travis said.
Milynda said some days are a complete disaster where she and Travis can’t think straight. Then another day with Heath will be good, and they are OK.
“Nothing gets easier, though,” Milynda said. “It’s not what we expected for our first baby.We have breakdowns every day. We can’t believe this is happening. But we try to stay positive around Heath. Sometimes I feel guilty, because we brought him into this world. But we didn’t expect anything would go wrong. We were so cautious with his prenatal care. All the doctors are sort of baffled with this because they know what’s wrong with Heath, they just don’t know why.”
Schad said the Cornford’s experience is an extreme example of how birth outcomes can’t always be predicted.
“Milynda had a picture perfect pregnancy in that regard,” Schad said. “All her prenatal tests were normal and Heath’s heart rate was always in the normal range. Throughout the delivery there was no indication he was in distress. It was a complete surprise.”
For now, the Cornfords will continue to manage as best as they can. They carry a pager with them at all times. Should a heart become available, they will be notified right away through the pager.
If a heart transplant is successful, Heath will have a long journey ahead of him: medications to ensure his new heart isn’t rejected. A bout of chicken pocks or a common cold will have to be closely monitored. Eventually, Heath will likely be able to play sports and live a semi-normal life. However, there is not a lot of research on how long a transplanted heart will last so no one really knows whether Heath will need another transplant someday.
Although there is much to consider with regard to their son’s future, the Cornfords are taking things day-by-day. A medical bill for $111,000 waits indefinitely on the couple’s kitchen table as they focus on getting their son through the next day, happy he has eaten enough for Milynda to change Heath’s first poopy diaper.
“He’s a fighter,” Travis said of his son. “He’s been fighting since the day he was born. And he still fights today.”
Editor’s note: The date of the Heath Cornford’s birth was changed from the original version of this story.