Community shows its heart for tiny patient
Ashley and Zach Daniel stand with son Caleb in his hospital room along with siblings Bo, 3, Cooper, 5, Jake, 7, and Kate, 10.
As Jesus was rounding up little angels to send them to earth, one held back saying he didn’t want to go, fearing he would miss Jesus, whom he loved dearly. Even when Jesus said it would just be for a visit, the little angel wasn’t swayed.
Jesus bent down to the angel’s level and said, “How about you leave half your heart here with me and take the other half with you,” adding He would make sure there would be other angels on earth to help him.
|Caleb has had three surgeries to date Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect affecting one out of 4,000 to 6,000 births. Submitted
“When you are scared, remember I have the other half of your heart,” Jesus told him.
“Go enjoy your time with your family. Play and laugh everyday and when it’s time to come back to heaven, I will make your heart whole again. Remember, you are not broken—just torn between two loves.”
This is an adaptation of a children’s story about Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect affecting one out of 4,000 to 6,000 births.
Among those statistics is a chubby-cheeked, happy little boy by the name of Caleb Bradshaw Daniel, who left half of his heart in heaven.
Born on April 10 to Ashley and Zach Daniel, who live in Sullivan Farms, Caleb has three older brothers and an older sister.
They have loved him so much he fights hard to stay with them so he can play and laugh everyday.
It hasn’t been easy for little Caleb. He has already undergone several surgeries and has only been at home with his family for a total of eight weeks out of his eight months of life.
“At my 20-week ultrasound at the end of November (2012), they found something not right,” said Caleb’s mom, Ashley. “He had an abnormality of the heart.”
An amniocentesis was performed to narrow down the cause of the abnormality.
Just a week before Christmas 2012, Ashley and Zach met with Dr. Mettler, a pediatric cardiologist at Monroe Carell Jr. Children’s Hospital at Vanderbilt to discuss the test results. It was then that they learned Caleb had HLHS.
HLHS is a life-threatening defect in which the left ventricle is deformed or undeveloped and unable to pump blood through the aorta to the body.
“It is the most complex of cardiac defects and offers the most challenges,” Ashley said.
Surgical intervention was first performed in the 1980s.
Since that time, the survival rate has increased to more than 86 percent after the three-stage prescribed surgeries.
The first stage surgery, called Norwood, is performed as soon after birth as possible.
That is followed by the intermediate surgery at six months and then the Fontan surgery between age one and two.
The surgery reroutes the blood flow to the right ventricle.
Caleb’s first two surgeries have been successful, but the variety of medications that go along with the surgeries caused seizures and bleeding in the brain. In early December Caleb had to undergo a craniotomy.
“He is the happiest baby and even after the brain surgery you would never know he had brain surgery—he’s laughing and smiling,” Ashley said. “He’s the toughest little guy. He’s amazing.”
In good hands
While Ashley and Zach spent days and weeks with their infant son at the Children’s Hospital, they missed their four other children at home—Kate, 10; Jake, 7; Cooper, 5 and Bo, 3—but they didn’t have to worry about them, they were in good hands.
Thanks to family members, neighbors, friends and the staff at the Children’s Hospital, they were all doing quite well.
“The hardest part was I was torn,” Ashley said. “I wanted to be with my baby in the hospital, but I wanted to be with the others at home.”
“Friends, neighbors, the whole community came together and held our family up,” she said. “From getting the kids to and from school and helping them get their homework done, they take them to church and their activities so they are able to live a typical life. Our life has changed so drastically we decided we are not going to stop their normal activities. They need to keep a normal life. This community makes sure they do.”
Gifts of love
The severity of Caleb’s condition dictates family members stay healthy and the house remain clean—no easy task with seven people living under the same roof. Thankfully, community members even offer to clean the house when Ashley needs to stay at the hospital.
“They have been incredible. They literally bring over cooked meals, snacks, lunches, breakfast,” she said. “They bring me a cup of hot coffee in morning because I don’t have time to make coffee. It’s incredible what people have done. We knew we lived in a great community, but until you see people step up and go above and beyond—well, they have taught our kids so much about giving.”
Since there was practically no time for shopping, this Christmas was a little lean for the Daniel children as far as gifts under the tree, but the gifts they did receive are far greater and will last longer. They are learning everyday is a gift.
“We’re trying to bring the meaning of Christmas back,” Ashley said. “Now more than anything, we have all learned the trust we have to have in God’s plan for all of us. Our job is to do His will—train our kids to walk in His way.”
Through all the worry, concern and sleepless nights, it’s easy to lose sight of the five-year old or three-year-old demonstrating typical five-year old or three-year old behaviors.
“I have to tell myself God is allowing me to raise them. They’re His children,” Ashley said. “My hope and prayer is they learn to look at our neighbors and how they help; look at the doctors, using the knowledge they learned through years of study, using the gifts God has given them to work on a newborn— a true miracle.
“My hopes for Caleb is to live a wonderful, long life; have the biggest heart for all he does in life, enjoy his siblings and remain the happy little boy he is.”
Posted on: 12/26/2013