Little miracles

Many a boy has sat on Santa’s lap to ask for a puppy for Christmas. This Christmas, 3-year-old Grayson Clamp won’t have to.

His new dog – a Golden Retriever named Tully – arrived at the Clamps’ home several weeks before Christmas, fully grown and trained.

Grayson’s parents, Len and Nicole, got what they asked for this year, too.

Their biggest gift came wrapped in what they believe is a miracle – one they were able to witness all over again the first time Tully barked and Grayson’s eyes widened in wonder.

Nicole Clamp has hugged more babies, patted more tiny bottoms and cooed sweet nothings in more little ones’ ears than she could count. As a nurse in the Carolina’s Medical Center nursery in Charlotte, N.C.,  doing those things was part of the job she loved. Even so, she never felt that she wanted – or needed – to be a mother herself.

Watch the video below of Grayson’s life at home today.

She had married Len Clamp, her high school sweetheart from Williston, S.C. They went to Clemson University together, where he studied business and she trained to be a nurse.

After graduation, they moved to Charlotte in 2001. Len went to work for Bank of America; Nicole started her nursing career at Carolina’s Medical Center.

They were happy, she said, and their life together seemed rich and full enough without children. “I love babies, I really do,” Nicole said, “but I didn’t have a burning desire to have one of my own.”

All that began to change the day her mother suggested that she and Len consider becoming foster parents.

Strangely, she said, there was something about that idea that felt right – almost as if it was something God was calling them to do. That’s how they became foster parents for medically fragile children and newborns, Nicole said.

Even then, she never intended to be a mom. “I just thought the children would stay for a little while and be going on,” she said.

That was exactly what happened with the children the Clamps cared for before Grayson came along.

From the start, Grayson seemed different.

The seventh child of a drug-addicted mother, Grayson was born with CHARGE syndrome, a recognizable genetic pattern of birth defects that occurs in about one in every 10,000 births worldwide.

Most have hearing loss, vision loss and balance problems. They are often born with life-threatening birth defects, including complex heart problems.

Grayson walks with his dog.

Nicole and Melissa Hendrick leave the house with Grayson and Tully on the way to see Santa Claus at Southpark Mall in Charlotte.

Grayson fit the pattern. He was blind in one eye and had a congenital heart defect known as Tetralogy of Fallot that prevented blood from flowing normally through his heart. The condition required open-heart surgery to repair it, and that is how Grayson ended up coming home with the Clamps eight days later.

From that moment, they knew he wasn’t leaving.

“When we brought Grayson home, I was convinced, and I think Nicole was too, that God had uniquely equipped us to take care of him,” Len said. “And we knew early on that God had brought Grayson to us not just to foster, but adopt.”

In fall 2010, a few days after they started the adoption process, Nicole found out she was pregnant with their son Ethan. Not long after that, they discovered Grayson was profoundly deaf.

‘A walk of faith’

Between three and four of every 1,000 children are born with some form of hearing loss, and roughly three-fourths of these cases can be helped with hearing aids. About one in 1,000 need cochlear implants – a 50-year-old procedure that has given hearing to thousands of adults and children.

Grayson was among the rarest of cases: children born without an auditory nerve, the wiring that transmits outside vibrations from the ears to the brain, creating sound.

Nicole remembers the day they found out from UNC otolaryngology surgeon Craig Buchman that the cochlear implant would not work for Grayson. But she refused to let go of the belief that Grayson would be able to hear and speak one day. To hold on to that belief, she did the only thing she could: she prayed.

The miracle they prayed for arrived in the form of an auditory brainstem implant, a clinical trial that Buchman and Matthew Ewend, chair of UNC’s neurosurgery department, had been developing for nearly a decade. The implant would insert tiny microchips inside Grayson’s brain, which would perform the functions of both the cochlea and the missing auditory nerve.

Grayson appeared to be a perfect candidate for the experimental procedure, Buchman told the Clamps.

When Grayson was 18 months old, Buchman inserted a cochlear implant, as required by the Federal Drug Administration, to see if it would work. The operation was a necessary step toward getting permission to perform the auditory brainstem implant as part of a clinical trial.

Once the operation was approved, one more hurdle remained: money.

“The most desperate I felt was when we got to the point we could schedule surgery and there was no money,” Nicole said. “Then, one day out of the blue, the medical director from our insurance company called to tell us they were going to foot the bill for the whole thing.”

Buchman and Ewend performed the surgery on April 9. In May, Grayson returned to Chapel Hill so the device could be turned on. That magic moment was captured in a video showing Grayson’s father tapping him on the shoulder and speaking the first words Grayson ever heard: “Daddy loves you.”

Then came the look that lit up the world.

Read more about Grayson and the surgical team and technology that brought this miracle to the Clamps.

Story by Gary Moss and photos by Dan Sears, both of University Relations.

Published December 18, 2013.