Your child was born six days ago and already requires open-heart surgery—in a few weeks they will need another one. The time between these two surgeries is critical, but the Hearts at Home program from Children’s of Alabama makes this stressful medical journey a little easier.
Hearts at Home was a valuable resource for the Cornutt family
In between baking sweet treats for her business, Rolls, we sat down with Katie Cornutt and her daughter Lyla. Katie told us how doctors diagnosed Lyla prenatally with Hypoplastic Left Heart Syndrome (HLHS).
The severe congenital heart defect causes the left side of a heart to not grow properly—making it smaller and weaker than normal. At only six days old she had her first open-heart surgery. Shortly following, Lyla’s second surgery took place when she was three months old.
After the second surgery, Lyla was finally able to leave the hospital. However, the months spent at home between these two surgeries are the most critical. It’s a stressful time for patients’ families—that’s when Hearts at Home from Children’s of Alabama becomes a vital resource.
How the program works
The program discharges parents with an iPad, scale, pulse oximeter and portable oxygen. Families record their child’s vitals such as daily weight, oxygen saturation and heart rates through an app on the iPad.
For babies born with a single ventricle, even the smallest change in their health can quickly become a serious situation. The app sends out a red flag to the guardian if a value entered is out of range, such as the patient’s weight.
Having tools within the app prompting families to immediately alert the Hearts at Home health professionals when something goes awry helps prevent life-threatening situations.
“We used Hearts at Home in-between the first and second surgery. It’s the time when it’s the most critical time for HLHS patients. If something is going to go wrong or sideways it’s going to be during that time.
So we used the Hearts at Home program to log her weight and eating schedule every day. It was pretty intense, I still have the scale we occasionally weigh her on.”Katie Cornutt, Lyla’s mother
From an iPad to a real team at Children’s
On the other side of the iPad is a vigilant Hearts at Home team. The group is made up of nurse practitioners and nutritionists who the patients know and are familiar with.
Sarah Blair, for example, is the Hearts at Home Coordinator and worked closely with the Cornutt family. She helped developed Hearts at Home in 2012. Now, she partners with many other health care professionals, such as Katelyn Staley, the discharge coordinator for Cardiovascular Services at Children’s of Alabama.
“These babies are medically fragile and can get sick very quickly. They have a very low reserve so something like a common cold or stomach bug can turn into a life-threatening situation.
The Hearts at Home program does a few things. It provides families direct, immediate access to a healthcare provider, who knows them and their baby, 24 hours a day. It also provides a way for the parents, and us, to track subtle changes to their health, with daily weight, oxygen saturation and heart rate checks. And we check on them regularly and provide a lot of reassurance and education for the families.”Sarah Blair, Hearts at Home Coordinator, Children’s of Alabama
24/7 access to medical specialists
When Sarah says 24 hours, she means it. Katie was in constant communication with Sarah Blair, Lyla’s nutritionist and her doctor.
“Having Hearts at Home is peace of mind, for sure. To know that they’re a phone call or a text away. They gave their personal phone numbers and would answer you on Sunday night at 11PM when she was running a fever.
It’s 100% peace of mind because you don’t know what you’re doing. I’m not medically trained I had no idea what I was doing. I was just trying to do the best I could by my kid.”Katie Cornutt
Dr. Wally Carlo, a Pediatric Cardiologist at Children’s, and Lyla’s doctor says he has around 15-20 patients who use Hearts at Home per year. These patients may have HLHS like Lyla, or have another complex congenital heart disease.
Hearts at Home allows Children’s to have all the babies closely monitored so their team knows about problems right away. Whether they’re here in Birmingham or hours away, he’s seen how it’s helped provide patients comfort while they care for their children at home.
“I’m grateful to be able to devote resources to having the program set up. I think it really benefits families and we have a great group of nurse practitioners who have that interaction with the family.”Dr. Wally Carlo, Pediatric Cardiologist, Children’s of Alabama
There’s no comfort like your own home
One of the best parts of Hearts at Home is in the name—you get to be at home. Patients are in their own bed and a space that’s familiar and warm as opposed to spending this previous time in a hospital room.
“Hearts at Home made it where it was easier to be at home and have that home environment because the children do better at home than in the hospital. To have that normalcy. Even though it wasn’t normal it became our normal. It made Lyla thrive easier and faster and better.”Katie Cornutt
Lyla and her big sister shot off for a neighbors house as soon as we finished up the interview. If it wasn’t evident by her bundle of energy, Katie confirmed Lyla is doing exceptionally well these days.
She is due for her third and final heart surgery within the next year. But Katie says Lyla is performing above and beyond what they could’ve ever hoped, thanks to Hearts at Home, a supportive family and the staff at Children’s.
Learn more about how Children’s Hospital is helping families like the Cornutts through their website and follow them on Instagram, Facebook and Twitter for updates.
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