Network of Care Helps Haylie Manage Her Heart Defect and Keep Swimming
October 17, 2022
Haylie was diagnosed with a rare, life-threatening heart condition before she was born. Her family is grateful to have Children’s Hospital Colorado's expanding network of care in their Casper, Wyo., community to ensure that the teenager can continue doing her favorite activities.
Almost everyone in Haylie’s family was born with a heart defect.
Haylie’s mom, Beth, Haylie’s older sister, Emilie, and even her dog, Buster, all have congenital cardiac conditions.
So, when Beth was four months pregnant with Haylie and doctors discovered the little girl had a life-threatening heart issue, Beth knew just where to turn: Children’s Hospital Colorado’s Heart Institute, the same place that had repaired her older daughter’s and her own Atrial Septal Defects (ASD) – holes between the chambers of their hearts.
Doctors determined that Haylie had a more serious diagnosis than her mother and sister, called Tetralogy of Fallot, a rare condition often caused by a combination of four heart defects. Haylie had issues with her heart valves and problems with her heart’s rhythm.
She was diagnosed with her condition before the hospital was able to perform procedures to fix babies’ hearts while they are in the womb, so her first surgery took place when she was 3 months old. After the first surgery, Haylie had four more heart operations over the course of her short life, three of which were open-heart surgeries. She also received a pacemaker.
“When I was in the ICU for two open-heart surgeries in 24 hours, the nurses there really helped me get through it,” said Haylie. “They were really motivating and nice.”
One of Haylie’s nurses, Carolina, noticed that the young girl had painted nails and toenails – and after being sedated for several days, her hair was tussled and out of place. So Carolina fixed her hair for her. “The nurse wanted Haylie to feel good when she got up,” said Beth.
Nurses also made a deal with Haylie to motivate her during her recovery: every time she walked a lap around her floor, they would take an IV out.
Because Haylie’s family lives in Casper, Wyo., they are grateful that Children’s Colorado has continued to expand its network of care and services to offer clinics in their community. The hospital’s Cardiology Department comes to the town every two weeks.
“I don’t know what we would do if we had to come to Children’s Colorado in Aurora with everything that has happened to us,” said Beth of the four-hour drive. “A few months ago, when Haylie fainted, I could just get on the phone to her pacemaker doctors. It’s awesome how easy they make it for us. With the outreach clinics, we can get the specialty care that we wouldn’t otherwise have in Casper.”
Soon, Haylie, who is now in high school, will transition into the Adult Congenital Heart Disease Program at Children’s Colorado, which helps manage kids’ heart conditions as they grow into adults. Heart defects that children are born with are very different than the heart diseases that adults acquire as they age.
“She can go through Children’s Colorado while she’s in college and into adulthood,” said Beth.
Beth describes her daughter as ambitious, determined, intelligent and funny. Haylie is a competitive swimmer, racing in the 500 meters, the longest distance event in high school swimming. She scored points in that event at her conference meet and missed qualifying for the state competition in the 50-meter freestyle as a freshman by just hundredths of a second.
Haylie’s heart condition restricts some of her athletic activities, such as participating in training drills in which swimmers are underwater for a whole lap without taking a breath. But her doctor, Michael Schaffer, MD, who has been her cardiologist since before she was born, partners closely with the family to ensure that the teenager can continue doing her favorite activity as safely as possible.
“Dr. Schaffer has always worked really hard on the swimming piece,” said Beth. “It was causing some issues for Haylie, but he made sure that she could keep swimming. He does everything he can to ensure that she can still do the things she loves.”
Today, Haylie enjoys baking – especially banana bread with her grandma – and thinks she would like to be a lawyer someday. She will need another surgery for her heart at some point in her life to replace her valve and pacemaker. Her family hopes that by then, research and innovations in stem cell science will have advanced enough that doctors might be able to grow a new valve for Haylie from her own cells.