Every breath a gift for 6-year-old with spina bifida

Jonny Littman, 6, of Brooklyn Township, is recuperating at home with his parents, Ruth and Charlie Littman, after a series of surgeries and complications. Jonny has Spina Bifida. STAFF PHOTO/PAT FARNELLI

BY PAT FARNELLI

Jonny Littman, 6,  didn’t want to ruin anyone’s Christmas.

Although he was in excruciating pain, the Mountain View kindergartener didn’t want to interrupt his family’s Christmas celebrations by asking for pain medicine. So he didn’t whine, even though the steel rods implanted in his spine had come loose and were moving around in his body, which was struggling to reject them. 

A sharp, new pain in his shoulder resulted from a clavicle clip that had come loose, tearing into his flesh.

Spinal bifida, a birth defect, compounded with severe scoliosis, was making him choose between eating and breathing; and a MRSA infection developing in his back was mutating and becoming resistant to antibiotics.

On Christmas morning, he snuggled on the couch with his mother and sisters, getting a respite from his wheelchair along with plenty of hugs. He told his family members that he loves them.

But after the presents were unwrapped, he turned to his mother and said. “It’s time, Mom.”

She understood that he meant he needed to go to the hospital.

The whole family sprang into action, and three minutes later, he was in the car, heading back to Geisinger’s Janet Weis Children’s Hospital in Danville.

“He is such a fighter,” said his mother Ruth. “Any adult who had been through what he has been through would be out of his or her mind.”

Jonny was diagnosed with spinal bifida before he was born, and with that information in mind, Ruth and Charlie Littman of Brooklyn Township had planned to adopt him months before his delivery date.

When he was born, doctors met with them outside the delivery room and suggested they might want to reconsider their decision. He was born with his spine exposed, and had a Chiari malformation that would paralyze him from the waist down.

When he was 48 hours old, surgeons removed the back part of his top two vertabrae and inserted a shunt to drain fluid from his skull. 

He has had many surgeries since, but on Oct. 29, the steel rods were implanted, to straighten his corkscrewed spine and give him height and breathing room.

 This started off a series of surgeries and interventions, they said. Because Jonny lacks bowel control due to his paralysis, his incision, which runs almost to his tailbone, was soiled, and became infected. The rods interfered with healing, and the infection lodged itself between the rod and his clavicle.

When they rushed him to Danville, the doctors xrayed his spine and found that his upper rod had come loose, and the hook was damaging his flesh.

The Littmans were unable to stay at the Ronald McDonald house because of the infection, so they stayed in his room or took turns sleeping in a motel room.

One of them is always with Jonny. Their determination to be with him constantly is bolstered by their observations of a toddler who has been in Geisinger since October, whose parents have only visited once.

For that reason, his parents have spent long stretches in Danville, paying $90 a night for hotel rooms, filling up innumerable tanks of gas.

 Ruth told how, when Jonny was less than 20 minutes old, a doctor urged them to reconsider their adoption plans, because of the extreme nature of his spinal bifida. He told her they were under no obligation to pursue adopting this child.

“But we had been waiting and praying three and a half months for him,” said Ruth. “He was our baby.”

Charlie recalls walking to the rolling baby cart in the neonatal unit and looking at the tiny boy, and reaching a finger to touch him. Jonny grabbed his finger and held on to it firmly. This is my boy,” he said, with great feeling. “I named him, I prayed over him for three months. I named him Jonathan, which means mighty warrior.”

Over the past week or so, the physicians were able to find one antibiotic that was able to overcome the bacteria’s resistance.

He is on aclindomycin by IV, and the hope is that the antibiotic and the wound vac will keep the infection at bay.

The top rod was removed, and a colostomy was done, to prevent him from reinfecting the wound.

He has an open hole in his back, at least four inches long by two inches wide, which is sealed shut with special tape and dressings.

A visiting nurse comes and changes the dressings now that he is home, and the Littmans hope he will be able to stay healthy for six to eight weeks more at home. “The best case scenario would be for him to go back to Geisinger in six to eight weeks, get the lower rod taken out, and sew him back up,” Charlie said. “Hopefully, the rod they left in will hold his spine in place long enough for his spine to fuse there and prevent the corkscrew effect.”

Next, they will let him heal for six months to a year, and hopefully address the rod issues again next year. When he is 10 or 12 years old, the surgeons will fuse his entire spine.

“Hopefully, this will make him at least 4’6″ tall, because he will stop growing then,” Charlie said. “His big thing is to be at least 4’6″, so that he can go on the big kid rides at carnivals and amusement parks.”

Jonny has received cards and visits from his kindergarten classmates, teacher Mrs. Barlow, and aide Veronica Thomas.

He is eager to get back to school, and the sweet-tempered boy with a sunny disposition is very much missed.

The Littmans are thankful for their church, Elisha’s Home and Ministries. Pastor Rob Ford and his wife Peggy have adopted several children with disabilities; Pastor Tim Overmiller frequently visits Jonny at Geisinger, spending hours playing video games.

His other wish is to be able to drive a car. He loves monster trucks, trains, race cars, and the demolition derby, and wanted a motor scooter the first time he saw one. He told his dad, “I want a wheelchair with a motor.” His godfather, Jack Rookstool, built him one.

“Uncle Jack understands Jonny’s need for speed,” said his dad.

As he sits with his parents in the living room for the hour or two he is able to sit up, he nestles up to his mother and says, “I love you more than the fish in the sea.”

 Charlie says, “He lives every day as if it was his last. He wakes up when it is still dark, and says, ‘Dad, where you been, it’s been morning time.'”

“He is so bright, has so much affection, and is so full of child simplicity,” his dad said.