At one-year-old, the average toddler can get themselves to a sitting position without help, pull up to stand and walk holding on to furniture; they may take a few steps without holding on, and may even stand alone. These are milestones that parents look forward to and adulate, but this has not been the experience for new mom Courtney Farrington whose daughter Harmoney Woodside celebrates her first birthday on May 6, but has hit none of the milestones.
Harmoney was born with a birth defect known as arthrogryposis, a number of rare, nonprogressive muscle disorders causing stiff joints and abnormal development of muscles. There are four types of arthrogryposis – amyoplasia, distal, classic and syndromic.
Harmoney was diagnosed with distal arthrogryposis, which affects only several joints, usually in the hands and feet, and range of motion may be mildly limited.
Harmoney’s arms and legs are affected. She also has clubbing hands and feet and had a stiff neck. At birth, her head touched her back, and her mom said the doctors did not think her baby would survive.
Having given birth in the midst of the COVID-19 pandemic, and lockdowns and curfews, Courtney never saw her daughter who had been placed into the Neonatal Intensive Care Unit (NICU), until five days after giving birth via Caesarean-section.
“When I first saw her, she didn’t look like a normal child,” she recalled. “One of her legs was basically bent across, she had clubbed feet and clubbed and hands, and her head was touching her back.”
Courtney, 18, recalls not getting emotional at the time, or crying at her first sight of her child. She does, however, remember the happiness she felt because her baby was alive.
The infant remained in the NICU for three months before her mom was allowed to take her home. Harmoney was sent home with a feeding tube in her stomach, and casts on her feet.
“I have a lot of support at home, so I didn’t feel like it was impossible to care for her. I don’t really stress myself out. I just take it one day at a time.”
But Courtney refused to believe that her daughter would never be able to sit up, walk, feed herself, change her clothes, or bathe herself – the small things people take for granted. And with the support of her family, the new mom began researching where she could get help and treatment for her child.
Once her daughter was no longer able to receive care at home and upon advice from doctors, Courtney decided to seek medical care for Harmoney in the United States.
“I couldn’t just keep her here and not get her any help,” she said.
In October 2020, she took Harmoney to Paley Institute in West Palm Beach, Florida.
“Paley has given us hope,” said Courtney.
With surgeries, Harmoney is expected to have a chance of independent life. She is expected to be able to walk and move her arms. Without the surgeries, Harmoney will be bedridden.
With just a few months of therapy, Courtney said her daughter has made remarkable improvement.
Courtney has to travel with Harmoney to the United States monthly for therapy. The visits, she said, are usually two to three weeks long every four to five weeks, depending on which area they are treating.
The medical institution does not offer financial assistance, and the family has to pay expenses out of pocket. Courtney said they have exhausted their savings in getting treatment for Harmoney, and have made an appeal to the public for assistance through crowdfunding. A GoFundMe account created on March 16, has seen $12,550 raised of a $500,000 goal from 267 donors as of yesterday.
The infant’s first scheduled surgery will help her knees to bend and relocate her left leg in her hip socket. Her second surgery will be on her elbows to allow them to bend.
The first two surgeries have been estimated at over $500,000.
They will be followed by surgery on her wrist and possibly her shoulders.
Since October, Courtney said Harmoney has had a lot of therapy and splinting and casting on her feet. During their first visit, she said Harmoney had five casts, at $1,500 each, which had to be changed every two days. Currently, she is wearing splints that have to be resized monthly. And will need many more surgeries.
For most types of arthrogryposis, a rigorous treatment of physical and occupational therapy can be successful in the improvement of the range of motion of the affected joints. In addition, patients may need splints to increase the stretching exercises and increase the range of motion. Casting is frequently done to improve foot position. Some children require surgery to address any deformities that the child may have been born with, and can include elbows, feet, hips, knees and wrists. Surgery is generally recommended if more range of motion is needed after therapy has achieved maximum results.
With proper treatment and surgeries, Harmoney is expected to be able to walk and have a normal life – one in which she can do things for herself. Her neck no longer touches her back, and the mom said they do exercises and therapy for her neck.
Despite Harmoney’s challenges so early in life, Courtney said she is glad she has her daughter and that she was not born with problems that aren’t rectifiable.
She also describes her toddler as “funny” and a child who “talks too much”. She also said Harmoney is not a crying child.
Harmoney’s feeding tube was removed in April and her mom said she’s eating baby food, oatmeal, cereal and veggies.
As she seeks assistance to give her daughter a chance at a normal life, Courtney said Harmoney will have to undergo therapy for life, but until she is approximately five years old, she will need constant therapy. She also wants to bring awareness to the rare, non-progressive muscle disorders that cause stiff joints and abnormal development of muscles.