COARSEGOLD — Like many of our children growing up in the mountains, Hannah Lewis loves her dog. He’s a blue-nosed brindle pit the family named Kenpo, after the Japanese martial arts. It’s no wonder they’re mutually devoted — she’s had Kenpo since he was six weeks old; he is seven years old now. Hannah’s almost 16. She likes music, and singing; she once sang the national anthem for our local youth football team.
Hannah’s favorite colors are blues and greens — green is the color of her dancing, soulful eyes; she has a light dusting of freckles across her nose. The TV show Friends cracks Hannah up, even though mom says it’s not always appropriate. In short, she’s pretty much a regular teen.
Hannah Lewis is a regular teen except for one enduring problem. She was born with spina bifida, a birth defect that occurs when the spine and spinal cord don’t form properly in the womb.
Hannah is the “greatest, brightest, most loving little girl,” says her mom, Lisa Lewis. “She lights up a room with her smile, and it doesn’t matter what’s going on in her world — she just tries to make others feel better. She’s an awesome kid.”
Hannah was in the hospital for the first three months of life, her mom points out, and survived her first spine surgery at just six weeks old. She’s had a total of eighteen surgeries over her short life. Hannah has, as a result, suffered from tethered spinal cord syndrome, among other complications. It’s a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column, causing an abnormal stretching of the spinal cord.
The fallout from these surgeries can be painful, and along the way her foot became deformed and her legs are two different lengths. Pressure on her foot caused a callus to form, not uncommon, and that led to a sore, a pervasive infection and a hole in her heel the diameter of a nickel that tunneled through to the bone. They had to pack it twice a day. She also has nerve pain because of being tethered.
For nearly two years, Hannah’s been fighting a seemingly relentless infection stemming from the wound, and has been in the hospital every single month since the problem began to be serious. She’s been in a wheelchair for a year-and-a-half, unable to walk, with limited bodily functions due to the damage to her spinal cord. Now, it’s hard to feel like a regular teen.
“When she is not feeling well, she doesn’t feel like doing anything,” Hannah’s mom says. “She’s in pain from the heel infection, though she has no feeling from her feet to her knees — but she feels the heel.”
Hannah is allergic to all antibiotics in the cipro family, which would normally do the trick to stem the pervasive infection. In order to tolerate the necessary medicine, she had go through a process called antibiotic desensitization, an option for treating patients with life-threatening infections who must receive antibiotics to which they have a serious allergy. The process takes place in the ICU where her reactions can be carefully monitored and Hannah receives one dose of antibiotic over a 48-hour period. Once that had been done, her foot got a little better. That was, until a different bacteria became prevalent in her system.
Hannah’s mom Lisa and dad John Carrington used to own The Fudge Stop in Coarsegold Village. It was John’s family’s special recipe for fudge that got them started, and they loved having the business. They closed everything down last summer, with Lisa explaining it was really tough to stay above water with time away at the hospital. Recently they’ve been trying to get Lisa’s vehicle fixed, and they have to rent cars to travel, because they only have the one truck. John does construction work and Lisa works for in-home support services, caring for her daughter.
Hannah has an older brother, Hayden Lewis, who is a senior at Yosemite High School. Her little sister Halie recently celebrated her thirteenth birthday in the hospital in order to have Hannah included in the festivity. It wasn’t the birthday she expected, says Lisa.
“It’s hard when you have a family member who is sick,” Lisa offers. “You try giving everyone equal attention, but it’s hard because I am always away.”
A few weeks ago, Hannah was so sick she became incoherent, and didn’t recognize her mom. Limp, she was rushed from home in Yosemite Lakes Park to Children’s Hospital, and even went into cardiac arrest on the way in the ambulance. Doctors said she had a virus on her brain, and was having seizures. She was in a coma for 24 hours, neither speaking nor opening her eyes. Hannah also endured some loss of memory.
There were further complications and the infectious disease specialist informed Lisa that Hannah’s body was resisting antibiotics, once again. Another round of desensitization was needed through a PICC line to get her little body ready for a complicated and extensive surgery to create a foot flap, in which her heel was removed to the bone and new tissue was grafted to cover the hole.
As it turned out, doctors didn’t want to wait any longer and put her on strong antibiotics so she could get the surgery without delay. With her body unable to use the antibiotics as it should, Hannah suffered some kidney damage. The surgery itself was successful, though, and the family is staying positive while her kidney function returns.
This was a more extensive surgery than what Hannah needed last summer, and Valley Children’s didn’t have the surgeons to do it, Lisa notes. So instead, they were accepted for the procedure at UCSF with Dr. William Hoffman, Chief of the Division of Plastic and Reconstructive Surgery, performing the surgery.
Despite mounting obstacles, Lisa says Hannah always has a smile on her face. Lisa wants to get her daughter healthy so she can enjoy being a teenager. Hannah wants to do things, instead of always being in the hospital, sick. Eventually, she needs another spinal surgery which will require a months-long recovery.
Frequently you can find Lisa waiting for a phone call from a doctor, or a hospital, always hoping for a solution. John’s dad and step mom are here, and friends they’ve met over the years have become like family, but other family is far away. Lisa tries to stay strong, though admittedly, lately, it’s been hard. She gets emotional, but showing that just takes a toll on Hannah, and Hannah has enough on her plate. Blessed with some good girlfriends who call her every day, Lisa talks to her mom daily on the phone just to hear her voice.
That’s important, says someone who knows well the family’s daily challenges.
Unforgettable is one word to describe Shelby Veater, a beloved young woman who graduated from Yosemite High School in 2016. Also born with spina bifida, Shelby was a longtime mentor for Hannah, and when Shelby passed away in 2017, Hannah felt the loss deeply.
“No one can ever truly understand what we feel or even the actions we take to support and advocate for our child,” says Shelby’s mom Nancy Veater. The Chasing Shelby Foundation has been established in Shelby’s name.
“Unless a person deals with being a caregiver for a disabled child, they will never truly understand. So to have a strong network of support to just listen, a shoulder to cry on, someone else that will show love, tenderness, patience to us and more importantly to our child is heaven-sent.”
Nancy says the hospital experience can be terrifying.
“The hours of watching monitors to make sure they are getting their medicine, that they are breathing without effort, that they aren’t in any pain or discomfort, the changes in nursing staff every shift and the constant training that we as parents have to give to the ‘new nurse’ yet again is agonizing,” she empathizes.
“The hours spent away from home, while we eat, shower, and sleep with our child, for fear of leaving them for just a minute is something I never wish on anyone, ever. The agonizing fear of constantly worrying of ‘will this surgery be a success? Will this hospital visit be our last?’ The love, encouragement, visits and small acts of kindness to our child or us as parents can never be underestimated.”
To that end, Helping One Woman Oakhurst will hold a dinner in honor of Lisa Lewis and her daughter Hannah, set for Wednesday, Apr. 17, 2019. The event will take place at The Hitching Post starting at 6 p.m.
In the meantime, Hannah is still in the hospital, mother by her side. The hours go by slowly, Lisa says, and they watch a lot of television. Hannah can’t keep food down, and she has a bad cough. Her foot, thank goodness, is doing well, so with any luck and lots of medicine, things will get better. The family makes an effort to be positive, Lisa affirms.
Keeping the home fires burning are John, Hayden and Halie. Also waiting patiently for Hannah is her dog Kenpo, and Hannah wants to go home. That will be a great reunion, and we sure hope it happens soon.
Photos courtesy of Lisa Lewis