Heart Warriors, Best Friends

Caleb Daniel, 5, Jayden Bradley, 6, and Caleb Aslinger, 5, have celebrated birthdays and holidays together, gone on scavenger hunts, held dance parties, played baseball and have met celebrity musicians and athletes like the Nashville Predators hockey players. They’ve seen animals from the Nashville Zoo, watched dog shows and puppet shows, and they even created a music band named the “Vandy Rockers.”

The events are memorable childhood milestones — with one difference. The boys’ experiences all happened within the walls of Monroe Carell Jr. Children’s Hospital as each waited for a lifesaving heart transplant.

For approximately five months, each boy lived on the seventh floor of Children’s Hospital in the pediatric cardiology unit. With failing hearts, their names were put on the transplant waiting list. First admitted was Caleb Daniel, then Jayden Bradley, and third was Caleb Aslinger — all within a few months of one another.

Not long after their admissions, the Vandy Rockers became well known around Children’s Hospital, often seen pulling their IV poles in tow, wearing portable oxygen nasal cannulas and, sometimes, facemasks to protect them from germs. Where one went, people were sure to see the other two not far behind. Their bright faces, when unmasked, always displayed smiles.

“It’s rare for kids to be in the hospital and to be that happy for that long of a period,” said Ashley Daniel, Caleb’s mom. “They are the three most awesome kids that God blessed with the best personalities. They trusted and had each other, instead of feeling so isolated.”

The boys also shared the same heart condition, hypoplastic left heart syndrome, or HLHS, a congenital heart disorder (CHD) affecting the left side of a newborn’s heart during fetal development. The cause is unknown. With this syndrome, the lower left chamber of the heart is too small and unable to adequately pump blood through the aorta, also smaller than normal, to the rest of the body. In addition, the mitral valves don’t work properly.

Treatment for HLHS usually involves a series of complex heart procedures — the Norwood, the Glenn and the Fontan — and if those don’t work, a heart transplant is required.

Then the waiting game for a new heart begins, which, for their age group, can average two to four months.

“Families draw strength from each other during their time in the hospital. They become communities of support for one another as they are facing the same challenges,” said Ann Kavanaugh-McHugh, MD, who specializes in congenital heart disease at Children’s Hospital and was part of the care teams for the boys. “In this case, there were three families waiting in the hospital with similar challenges and in the same age group. These are amazing loving families who you would love to have as your neighbors or friends.”

As Caleb Daniel, Jayden Bradley and Caleb Aslinger waited for their new hearts at Children’s Hospital, their friendship and personalities during those months inspired the many people they came in contact with — doctors, surgeons, nurses, Child Life specialists, music and art therapists, the Seacrest Studios manager and beyond.

“Our hospital has a tremendous sense of community — community in the way the staff interacts, the way we partner with outside organizations, and in the way we operate on a day-to-day basis with patients and families to give them the support and bonding experiences they need while waiting for

a transplant. We believe ‘it takes a village’ and Children’s Hospital knows exactly how to pull that village together for the benefit of each individual child,” said Meredith “Mamie” Shepherd, Seacrest Studios manager at Children’s Hospital.

“The Calebs and Jayden were a special group…They really were a band of brothers. They developed a community of friendship.”

 

Caleb Daniel   

Caleb is the fifth child of Ashley and Zack Daniel, of Franklin, Tennessee. Because their older son, Jake, now 11, had a congenital heart disorder, the Daniels had their three younger boys screened for CHD during prenatal ultrasounds as well as after birth. It was at Ashley’s ultrasound during her 20th week of pregnancy that doctors raised concerns about Caleb’s heart, and she was referred to Vanderbilt.

Born April 10, 2013, Caleb was whisked away to begin a medication to help his heart work. At 1 week old, he underwent the Norwood procedure, the first in a series of reconstructive surgeries of the heart.

“We had quite a few issues develop after the first surgery,” Ashley said. “He had a stroke, he had seizures and we struggled to keep his oxygen saturation levels where he needed them to be.”

When Caleb had the Fontan surgery, he never seemed to fully recover. He had plural effusions, meaning fluid from the heart develops around the lung.

“He had a heart catheterization in May 2017, and it showed he was in heart failure. He was listed for transplant and remained in the hospital as an inpatient to wait for his heart,” Ashley said.

 

Jayden Bradley

By the time Jayden Bradley arrived at age 2 to live with the family who would eventually adopt him, he had already been through six heart surgeries. Annie and Jonathan Bradley were determined to provide Jayden, who was unable to walk or talk, with love, make him feel at home and care for his hypoplastic left heart syndrome. Only married two years, the Bradleys suddenly became guardians of two children, Jayden and his sister, Alli, then 7. The brother and sister were also family — Annie’s second cousins.

Annie knew that Jayden was diagnosed in utero with hypoplastic left heart syndrome. He had not done well with his past surgeries before coming to live with the Bradleys. Soon after his arrival in their home, Jayden began walking and talking. Once more steady on his feet, he would run, but would get short of breath and his face had a bluish tint due to lack of oxygen.

“We knew eventually he would have to have a heart transplant. We didn’t think it would be as soon as it was, but his oxygen was getting down to 50 percent. When he was running, doing anything with physical activity, his oxygen was dropping, but you would have never known that with how he always ran. He was a superhero,” said Annie, who is also a home health nurse.

When Jayden’s shortness of breath worsened, his cardiologist English Flack, MD, admitted him to the hospital July 7, 2017, to wait for his new heart.

“I don’t think we fully knew what we were getting into, having to stay so long, but I know other kids have to stay longer. He knew his heart was sick. We told him he we had to get a special new heart put into his body so he could be better. He was OK with that,” Annie said.

 

Caleb Aslinger

Stephanie and Rodney Aslinger learned that Caleb’s heart was not developing correctly at 19 weeks gestation. They would wait another four weeks to learn from a specialist that he had HLHS. At the time they lived in Chattanooga, Tennessee, and the plan was to deliver their son at Children’s Hospital at Vanderbilt under the care of the fetal specialty team.

“Our two older sons both had healthy hearts. All this was completely eye opening and a learning experience,” said Stephanie Aslinger. “When we found out something was wrong, all I cared about was getting the baby healthy. The only name we really talked about was Caleb. Some friends at church told us that Caleb means ‘whole hearted.’ We knew that was his name, end of story.”

Caleb was born April 9, 2013, weighing 10 pounds, 1 ounce, an unusually large baby given his heart condition. His size, however, made it easier for surgeons when they performed his first heart surgery at 2 days old.

Like the other two boys, Caleb would have several heart surgeries in attempt to repair his heart — the Norwood, the Glenn and the Fontan — with each stage carrying its own challenges and sometimes isolation to avoid illness.

Caleb was admitted Aug. 28, 2017, when he developed plastic bronchitis, a serious respiratory illness where fluid from the lymphatic system creates rubbery plugs that block the airways in the lungs. He had to wear a special vest around his chest that would shake him for 20 minutes, four times a day, along with breathing treatments.

 

Every day was an adventure

The two Calebs, born only a day apart, and their parents were friends with each other before the long hospital stays to wait for a transplant. The parents first met in the family waiting room at Children’s Hospital. After the dads began talking about baseball, the rest of their stories unfolded, which had striking similarities. Ashley and Stephanie soon connected by phone.

“At first I didn’t want to talk to anyone; I didn’t want any advice. My husband pressed me to call Ashley,” Stephanie said. “To know someone else is going through the same thing, even though there may be differences, helps.”

When Caleb Aslinger was admitted, Stephanie says, he noticed Jayden across the hall from him and was intrigued that “there was another little person besides him.”

“Once we got adjusted and his treatments in order, we went on walks and more adventures,” Stephanie said. “I’ll never forget the time the nurses took all the boys to the fish pond. Caleb (Aslinger) put his hand on Jayden’s shoulder. I think Caleb realized he wasn’t alone.”

The boys spent a lot of their early years of life more isolated than most toddlers or preschoolers, not able to play freely on potentially germy playground equipment or roam through large crowds of children, particularly during cold and flu season.

“Caleb hadn’t been around a lot of kids because of having to stay in a lot. So with the other Caleb and Jayden, he wanted to go on a lot of adventures and to Seacrest Studios. It helped him tremendously,” said Stephanie Aslinger. “I hate that all three of those little boys had to go through what they went through, but to put all of them together at that time, I think helped all three of them.”

The boys spent time at Seacrest Studios for special guest visits or events whenever they could, often made possible by their medical teams. The studio, opened in partnership with the Ryan Seacrest Foundation, allows patients to explore the creative realms of radio, television and new media that can aid in the healing process for children and families during a visit to or stay in the hospital.

“It was the perfect thing for the boys that they were able to develop lifelong friends,” said Ashley Daniel. “They played hockey and baseball out in the hallway. And I give full credit to the staff. They would create story time for them. The chaplain came and did Bible stories. The nurses would sing songs at night to them. I can’t say enough about the wonderful team.”

The team also organized a scavenger hunt for the boys on Jayden’s 6th birthday.

“I thought we would be stuck in a room and Jayden would be miserable. We had never had that length of stay. But to see what Vanderbilt offers children is just very heartwarming. The hospital is amazing,” said Annie Bradley. “The boys all had the same idea of funny. They were family; they are family. It’s difficult being somewhere five-and-a-half months and not being around people that you know. So to be able to form those relationships, not only with the mothers and fathers, but with the nurses and everyone else, it makes everything seem better.”

Often alongside them, leading the adventure, was their Child Life specialist, Camille Fraser, who is dedicated to the pediatric cardiac ICU. Child Life specialists are trained members of the health care team who seek to provide patients with developmentally appropriate information to help them understand their need for prolonged hospitalization or to offer procedural support.

“I try to make the hospital feel more normal for my families through play, inviting them to participate in the hospital-wide special events, and continued therapeutic visits. In the case of Caleb, Caleb and Jayden, their story is unique because they found support not only from me and other staff members, but also from each other. The same can be said for their parents,” said Fraser.

“These boys got to know each other very well by going on ‘adventures’ to Seacrest Studios. Each morning, the boys would ask me, ‘What’s our adventure today?’ They would plan their days around getting to be a part of the fun (at hospital events).”

In Seacrest Studios when talking to celebrities, like the Nashville Predators hockey players, the boys used the code word ‘toilet paper’ because they thought it was funny. It also meant the celebrity could be a part of their “club.”

“Our hospital not only provided critically important health care, we also provided activities that enhanced their stay and got right to the heart of a child’s happiness, even if it included talk of toilet paper,” said Seacrest Studios manager Shepherd.

 

‘The call’ and going home

For each family, the news that a new heart was available came in different ways — and at different times. In the order they were admitted, so went the order of the heart transplants — Caleb Daniel, Jayden Bradley and Caleb Aslinger.

For the Daniel family, the call came on the evening of Friday, Sept. 29, 2017. Ashley had just arrived home from the hospital. When she looked at the caller ID, it said ‘Vanderbilt,’ and she knew. “I went numb,” Ashley said. The surgery began the next day, finishing Oct. 1. They left the hospital a month later.

The Bradley family got the call at 12:55 a.m., Dec. 8.

Jayden was able to leave the hospital about two weeks later, just in time for Christmas.

Stephanie Aslinger learned on her wedding anniversary, Jan. 31, that Caleb, who was missing his buddies, was getting his heart the next day. “It was the best anniversary gift ever.” By Feb. 17, Caleb Aslinger, the last of the Vandy Rockers left the hospital.

“When you leave the hospital it’s with mixed emotions,” said Ashley Daniel. “Obviously, you’re very excited to be able to go home. But we miss our friends and the staff who are truly our family.”

The Vandy Rockers are all at home now doing well post-transplant. They don’t live too far apart. Both Calebs live in Franklin, Tennessee, with Jayden living about an hour further south in Lawrenceburg. With their suppressed immune systems and need to avoid germs, they’ve only been able to get together a couple times since leaving the hospital, but sometimes see each other at their follow-up appointments at the hospital.

Caleb Daniel, an avid Nashville Predators hockey fan who carries around a Pekke Rinne doll, spends his time watching NHL hockey and playing with his golden retriever, Macie.

Jayden, who went home to a newly decorated room with décor from his favorite cartoon show “Paw Patrol,” has begun playing T-ball and will soon begin going to school.

Caleb Aslinger loves going on walks and practices hitting the baseball with his dad. Now that the weather is nice, he sits on the backyard deck or likes to lie in the hammock.

“We’ve FaceTimed (the other boys), we’ve talked on the phone and we’ve run into Jayden on appointment days. It’s like they’re getting to know each other again after heart transplant,” said Stephanie Aslinger. “I can’t wait until they’re all better and they can have play dates and interactions and just be kids.”

– by Christina Echegaray