Jill Harold paused as she registered her 3-year-old daughter, Brooklynn, for a gymnastics and dance class. “Are there any medical conditions we should be aware of?” the form read.
Smiling to herself, Harold proudly wrote “no.” It was a pivotal moment for her, as the mother of a bright, curly-haired girl who had been born with clubfoot, the most common inherited congenital limb deformity.
A mid-pregnancy ultrasound showed Brooklynn’s right foot was turned inward, and doctors had to prepare the Harolds — Jill, her husband Josh, and their twin boys Bryson and Brayden — for years of treatments that would help straighten out the limb.
The deformity is more common in boys than in girls and affects one to two in every 750 children worldwide. Clubfoot is treated nonsurgically using the Ponseti Method, which includes a combination of stretching, casting, a procedure called a tenotomy and bracing.
“It’s a tough journey,” Harold said. “As soon as they’re born, within the first couple of weeks, they start casting. A new baby alone is hard, and then you throw in that once a week they’re going to have a cast put on for four to six weeks … the casts gently manipulate the foot to a more normal position.”
While the condition itself is not painful, treatment can be uncomfortable, Harold said.
“They’re a baby and they’re getting thier foot stretched and manipulated so it’s uncomfortable and there’s a lot of crying,” she said.
After casting, Brooklynn had a small surgery on her tendon, then had to wear foot braces for 23 hours a day for a couple of months, Harold said.
Today, Brooklynn straps on her open-toed boots held in place with a bar — what she refers to in her tiny 3-year-old voice as her “bootses” — every night when she goes to bed. The “bootses” come off in the morning and Brooklynn can freely walk and run throughout the day with her friends and siblings, unencumbered.
Upon her daughter’s diagnosis, Harold knew right away that she wanted to learn as much as she could about the deformity and help other families affected by it. She started a Facebook group called Clubfoot Community of California. It started with 40 members and has grown to 820.
Harold, a part-time teacher at Mountain View Elementary School in Clovis Unified, also became an advocate for clubfoot-affected families and an ambassador for MiracleFeet and the Ponseti Method of treatment.
To make a larger impact on local families, Harold volunteered as a Clubfoot Clinic Parent Mentor at Valley Children’s Hospital, where her own daughter received treatment.
“The hardest thing for the mom to accept is that nothing you did caused it, and there is nothing you could have done to prevent it,” Harold said.
It’s also hard to commit to putting the braces on every night to prevent relapse, she said.
“It’s really easy to just take those braces off to get some sleep,” she said. “It’s a struggle. Who wants to sleep with these on their feet? “
Harold wanted a way to motivate her own family and other families to continue treatment and look ahead to the light at the end of the tunnel. So, she decided to write a book.
“I said I want to write a book to help families, to help explain to siblings what’s going on, and to just deliver that message to keep working hard, keep persevering and you can do and be anything you want to do,” Harold said.
Two years in the making, “Hip, Hop, Hooray for Brooklynn Bunny!” was released last month. The children’s book tells the story of a determined little bunny born with a twisted paw. She wants to participate in the Hippity Hop Games, but she must wear her braces every night to straighten out her paws so she can play hop rope.
Brooklynn’s 6-year-old twin brothers are featured in the book as well, and encourage her to keep trying.
“I wanted to include our whole family in the book because it’s really a family journey,” Harold said.
The book is the only one Harold knows of that features a female main character with clubfoot — although its message of perseverance and hard work outshines the anecdotes about a deformity.
“You’ll notice that clubfoot is not mentioned one time in the book because we didn’t want it to just be about that,” Harold said. “It says the feet were twisted.”
The book was co-authored by Betsy Miller, a Northern California resident who wrote “The Parent’s Guide to Clubfoot.” Miller guided Harold through the editing and publishing process, Harold said.
“Brooklynn is going to have this as a legacy; she’s going to have it for ever. And other clubfoot families can have it forever,” she said. “I was never in this for the money; you just want to get this into people’s hands.”
The paperback can be purchased for $8.95 online at Amazon and www.barnesandnoble.com. Jill and Brooklynn Harold will also sign copies of the book from 11 a.m. to 1 p.m. Saturday, April 8 at Petunia’s Place, 6027 N. Palm Ave. in Fresno.
What: “Hip, Hop, Hooray for Brooklynn Bunny!” book launch and author meet and greet
Where: Petunia’s Place, 6027 N. Palm Ave., Fresno
When: 11 a.m. to 1 p.m. Saturday, April 8