The Beyers family recalls daughter’s journey to health
By James Feichtner
Lucy Beyers is your average three-year-old girl. She constantly smiles, laughs, loves to play with her siblings and enjoys her dance class at the Monon Community Center. But from the day she came into the world, Lucy has dealt with far more than the average three-year-old.
Lucy was born with a rare congenital defect known as heterotaxy syndrome, a condition where her major visceral organs do not grow in the correct area of the body.
“We knew she had something wrong, we just didn’t know the severity,” Lucy’s mother Courtney Beyers said. “Until she came out we didn’t know what we were dealing with. And I would say that it was a little worse off than we were anticipating.”
Doctors eventually confirmed that the condition was in fact heterotaxy syndrome. The devastating news had Bill and Courtney Beyers soon searching for help to save their newborn daughter. They looked into several different hospitals. Finally they decided to go with Riley Children’s Hospital, a decision that the Carmel couple has never regretted.
“We looked into Boston, one in Illinois and one in Michigan,” Courtney said. “We definitely did explore our options but in the end we felt like Riley could take care of her and heal her and they definitely did a good job.”
With Bill and Courtney both growing up in Indiana, they had heard of Riley before, but didn’t realize how much of an impact the hospital would eventually have on their lives.
“You hear of Riley, especially because of living in the neighborhood, but we had no idea how much we were going to need Riley, and thank God for Riley,” Courtney said.
Aside from Riley’s reputation, it was the staff at Riley that sold the Beyers on choosing the facility. Courtney recalled that the staff went above and beyond for their family.
“The nurses were great, the cardiologists were great and everyone was really good, but you just want to know that someone who is top-notch is taking care of your kid,” Courtney said. “Our cardiologist Anne Farrell became part of our family. She wasn’t even working the day that Lucy had her open-heart (surgery) and she scrubbed in and went into the [operating room]and just did her part to just kind of reassure us that everything was okay. So they truly go over the board to kind of help out and make sure you feel okay.”
But it wasn’t an easy task getting Lucy into the healthy state she enjoys today. Lucy had to undergo several surgeries at Riley. By the time the she was three months old, Lucy had gone through three operations.
“She’s had two heart surgeries,” Courtney said. “Her big open-heart surgery was at three months of age…she spent almost her first six months at Riley.”
Looking at Lucy today, one would never suspect the rigorous, life saving treatments she had gone through at her early age.
“She’s perfect,” Courtney said, “You would never know she laid in a hospital bed for six months and was on a ventilator. She really is a miracle. Riley did a lot of good for us.”
While the Beyers family has a lot to thank Riley Children’s Hospital for, Dr. Farrell said that because Lucy’s parents were so well informed about her condition, the entire process went much smoother.
“What I remember significantly is how prepared they were,” Dr. Farrell said. “They were very well informed and had obviously done their research.”
Because Bill and Courtney were so well informed about Lucy’s condition before she was born, they were able to make important decisions on how to handle her condition that ultimately affected her outcome.
“Quite frankly they are part of the reason why Lucy was able to get the malrotation prepared laparoscopically,” Dr. Farrell said. “They were really, really adamant that that’s the approach that they wanted to do. Had they not looked into it and investigated it, I would have just said, okay we just have to do it the classic, old-fashioned way. It would have never dawned on me to start investigating whether we could actually had done it another way.”
Today the Beyers family continues to show their gratitude for Riley by giving back in anyway they can. Even though Lucy may not remember her experience with Riley, Bill and Courtney will certainly let her know how Riley saved her life.
“We do try to stress the importance of giving back,” Courtney said. “We do a lot of stuff for Riley, just because we are so thankful for them. Thank God it happened to her as a baby so she doesn’t remember it, but I think it’s aged Bill and I a couple of years. When she grows up we’ll definitely teach her and instill in her the importance of what all Riley did for her. I know it might sound cliché but if we didn’t have Riley then she wouldn’t be here with us.”
As of press time, the Riley Children’s Foundation raised more than $5,000 with the help of the Beyers and other families helping to raise money for last month’s ‘My Heart Belongs to Riley’ campaign. To learn more about Riley Children’s Hospital visit http://iuhealth.org/riley/ or to donate visit rileykids.org/health.