Weighing only 17 pounds, 10-month-old William Gorham lay sleeping in the infant carrier sitting on the picnic table beside his mother and father, Travis and Jessica Gorham, as they watched their 3-year-old daughter, Grace, play at Forest Park.
“All he does is sleep anymore, because of all the meds he’s on,” Jessica said of William, who was born Aug. 7 in Parsons.
The couple thought everything was fine. William had all 10 fingers and toes, and as he began to develop in the coming weeks, he’d smile at them, bringing that special joy only a baby can.
The end of November, William began to have what his mother thought were seizures. A consultation with Dr. Manish Dixit, a Parsons pediatrician, led to William being admitted to the hospital and the next day being transferred to Children’s Mercy Hospital in Kansas City. He spent the first week of December there.
“They told us it was exaggerated startles and sent us home,” Jessica said. Infants with the disease, also known as hyperekplexia, have an exaggerated startle reflex to noise and touch followed by muscle stiffness that can cause breathing problems and lead to sudden infant death syndrome (SIDS). It is believed the problem is genetic, and symptoms usually diminish after the first year, though it can extend into adulthood.
Watch over William intensified as did their concerns. As William worsened, Jessica had to quit her job to remain home and care for him.
In January, the Gorhams returned to Children’s Mercy and saw a neurologist. Jessica produced videos for them, again stating she felt William was having seizures. Again they were told it was exaggerated startles.
“It’s stressful. It’s hard. We told them there was something not right,” Jessica said.
The problem increased in the following weeks, with clusters of seizures throughout the days.
March 31, William had what appeared to be three seizures back-to-back that she recorded on video. The next morning William appeared to be seizing again, followed quickly by another that did not seem to stop, so she took her son to the hospital.
“I called Dr. Dixit and said we were going to the hospital, that William was having seizures and I know what they are,” she said.
The seizure stopped on the way and the emergency room doctor said he could not diagnose from a video. Given what they had been experiencing with the seizures coming in clusters, she told the doctor she could just about guarantee another would happen shortly. The doctor had made it down the hallway when another seizure began. The doctor got back to the room in time to catch the tail end of the seizure and see William’s feet turn blue.
The doctor called Dr. Dixit. When Dr. Dixit came in, he told them he wanted to transfer William. They requested an alternate hospital to where he had been seen before. Dixit made arrangements for William to be transferred to Wesley in Wichita and sent Jessica home to get William’s special formula, EleCare.
By the time she arrived at the hospital the helicopter had arrived.
“I knew it was for him. They were holding him at the nurses’ station. They said, ‘He had another seizure and we had to give him Ativan to bring him out of it. We’re life flighting him.’”
Within six hours of being at Wesley, William was diagnosed with myoclonic, tonic-clonic (grand mal) and clonic seizures and was placed on medication.
In December,while at Mercy they were told William had a calcification on the left frontal lobe of his brain. They said it was basically a calcium deposit that had nothing to do with his problems.
The couple told the pediatric neurologist at Wesley, Dr. Bassem El-Nabbout, about the calcification and asked if it could be causing the problem. He said it was a good possibility, because it can be interfering with his brain development.
The doctor raised the dose of one medication and William was still having 30 plus seizures a day. He added another anticonvulsive medication and told the Gorhams he believed William would be a good candidate for epilepsy surgery.
Thoughts of their son having brain surgery were difficult to digest, but the alternative was leaving him in a condition in which he was only somewhat responsive to medications, still having around 10 seizures day.
“It’s hard not to panic and freak out because seizures can kill. There have been so many cases where kids go into seizures and quit breathing and they die. The bigger the seizures are, the more likely it is to happen. It was extremely stressful and extremely hard. It still is. Between the both of us, we probably get two hours of sleep a night,” Jessica said.
They opted for surgery.
In May, the hospital did a five-day EEG, attaching 30 to 40 electrodes to the top of William’s head that helped with localize the origin of the seizures in William’s frontal lobe. The origin was determined to be near the calcification.
“They also said he might have a tumor, because he has a lesion in the left frontal lobe of his brain as well, and they said the lesion may be a tumor, but they won’t know for sure on that until they get in there,” Jessica said.
A sedated MRI is scheduled for William June 18. Then the surgery.
In the surgery, Travis said doctors are going to cut a whole in William’s skull about the size of an Oreo. They will place electrodes on top of William’s brain that look like stickers and they will place what looks like needles deep in his brain.
“They are electrodes, too,” Jessica said. “They will give the exact pinpoint of where to remove part of his brain.”
William will remain in the Pediatric ICU from July 1 until July 5, when they will take him back into surgery to remove the calcification and any other brain tissue believed to be creating seizures.
“The doctor said there’s a 50% chance it will stop the seizures,” Travis said. “They can’t guarantee it will stop them, but they are hoping.”
If it doesn’t stop them completely, Jessica said they are hoping it will at least reduce the medication William has to take to control the seizures.
This past weekend at Children’s Mercy, medical staff put William on a feeding tube as his appetite has been depleting.
“They determined he has failure to thrive. He’s been 17 pounds for two months. He doesn’t want to eat. They want him eating at least 35 ounces a day and he is getting maybe 20. And also he fights you with taking medication. He gags and he spits out 90%. So the feeding tube is to help him gain weight, especially before surgery, and so it’s easer to get the medicine in him,” Jessica said.
Jessica looked at her son, so tiny for his age, sleeping peacefully.
He sleeps most of the time now. When he’s not sleeping his crying,” she said, noting he will often grab the left side of his head and rub it.
“He’s had spinal taps done. He’s had MRIs done and CT scans done. He’s had so many tests done. I don’t even remember all of them. Weekly lab work. And now he’s going to have brain surgery,” she said.
Recently, the couple has tried to hold bake sales to raise money to help pay for their gas and food as they travel to appointments. They are trying to raise enough for Travis to be off work through the surgery and during the initial recuperation period in ICU, as he has faced a temporary lay off from his construction job until he does not have to be off work for his son’s appointments and surgeries. They have opened a GoFundMe page for William’s Medical. Response hasn’t gone well either, they said, which they attribute to so many people trying to run scams.
The Sun was able to verify the scheduled surgeries for William.
“Before he was on meds, he was constantly smiling, laughing and looking at you,” Jessica said. “Now he is sleeping or crying. He’s so small. He does not sit up on his own yet and he’s 10-months-old. He’s not crawling yet. We are hoping the surgery will change that.”