After two surgeries – a right arm elbow release, which will allow it to bend at 90 degrees, and a left arm rotation – it is Courtney Farrington’s hope that her toddler daughter will finally be able to play with her toys, feed herself, and even put on a shirt, things that many parents take for granted. But it’s still too early to tell what Harmoney Woodside will be able to do as a two-year-old as she remains in a cast for another two weeks while she heals.
Harmoney had surgery on her arms on May 26 at Shriners Children’s in Erie, Pennsylvania. She is scheduled for another surgery in July on her legs, which will hopefully allow her knees to straighten. Harmoney also has to have hip surgery, but the knee surgery has to happen first. She is also expected to have surgery on her wrists and, possibly, her shoulders.
“She’s good,” said Farrington, of her daughter who only had to overnight in hospital after the three-hour procedure. “She’s been fine actually – better than expected. Honestly, I don’t even feel she knows she had surgery because she’s playing, talking and being a normal kid.”
Harmoney was born with arthrogryposis, a number of rare, non-progressive muscle disorders, causing stiff joints and abnormal development of muscles.
She was born with clubbing hands and feet and had a stiff neck. At birth, her head touched her back.
With surgeries to correct the birth defects, the toddler is expected to have a chance of an independent life and be able to walk and move her arms. Without the surgeries, Harmoney will be bedridden.
“You pray for these days to come, and when you wake up, you can’t believe you’re here,” said Farrington after the first of what is expected to be a number of surgical procedures her daughter will have to endure. “I wasn’t too scared … or trying to not show that I was scared,” she said.
The mother said it isn’t the surgery that’s hard on her, but more so the therapy Harmoney has to endure.
“Having to deal with screaming, it takes a toll on the family. I don’t want to see my baby in pain,” said Farrington.
Farrington and Harmoney’s dad, Nathaniel Woodside, along with her grandmother Caroline Farrington, arrived at Shriners on May 17 for the surgery. The toddler’s parents will remain with her through June 17 as she engages in therapy.
It has been “baby steps” to correcting Harmoney’s birth defects.
The life of abnormal doctor visits began with therapy in June 2021 at a Florida medical institution which assisted the toddler and helped her get to the point where she could roll over and almost sit up, and included therapy on her arms and legs, and casting and splinting her hands and feet.
Despite her medical challenges Harmoney’s mom said the toddler continues to thrive, and like children her age with the natural inclination to try to stand up, has tried to stand up, but couldn’t because of the birth defect. Her parents tried to facilitate her standing by purchasing a walker for assistance.
Farrington and Woodside saw Harmoney stand on her own feet for the first time as a 13-month-old, albeit with the aid of a harness, in June 2021. They are hoping for the day their daughter is self-sufficient.
While Harmoney cannot meet the developmental milestones of other children her age without surgical intervention, the way in which she is totally normal according to her mother, is that Harmoney is talkative, and she describes her child as a “smiley baby”.
“She loves people and loves to smile,” said Farrington.
As the parents work to ensure Harmoney has some sense of normalcy in life, Farrington has no idea how much money she has spent on medical bills. She tries not to calculate, but said she knows it’s a lot, and that she just takes it one day at a time.
Harmoney’s therapy sessions alone were $300 each, and she engaged in daily therapy.
Farrington bakes and uses the money she raises from her goodies to assist with her daughter’s medical expenses. Harmoney indulged in her mom’s creation for her second birthday.
Having given birth in the midst of the COVID-19 pandemic on May 6, 2020, and lockdowns and curfews, Farrington never saw her daughter, who had been placed into the Neonatal Intensive Care Unit (NICU), until five days after giving birth via Caesarean-section.
“One of her legs was basically bent across, she had clubbed feet and clubbed hands, and her head was touching her back,” she recalled of seeing her infant for the first time.
The mom did not give into histrionics but rather said she remembers the happiness she felt because her baby was alive.
Harmoney remained in the NICU for three months before her mom was allowed to take her home. She was sent home with a feeding tube in her stomach and casts on her feet.
But Farrington refused to believe her daughter would never be able to sit up, walk, feed herself, change her clothes, or bathe herself – everyday things that people take for granted. With the support of family, the new mom researched where and how to get help and treatment for her daughter. Once her daughter was no longer able to receive care at home, and with advice from doctors, Farrington sought medical care for Harmoney in the United States (US).
In October 2020, she took Harmoney to Paley Institute in West Palm Beach, Florida. She said officials there gave them hope.
The medical institution does not offer financial assistance. Harmoney’s medical expenses have to be paid for out of pocket. The toddler’s parents made an appeal to the public for assistance through crowdfunding. A GoFundMe crowdfunding has raised $21,754 of a $500,000 goal. The last donation to the account was two months ago.
Farrington said some people have also opted to make donations directly to the medical facility.
There are four types of arthrogryposis – aymoplasia, distal, classic and syndromic. Harmoney’s parents are seeking to correct their daughter’s distal arthrogryposis, which affects only several joints, usually in the hands and feet, and range of motion may be mildly limited.
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 might 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. Farrington said they do exercises and therapy for Harmoney’s neck.
Despite Harmoney’s challenges early in life, Farrington has said she is glad her daughter was not born with problems that aren’t rectifiable.
As she seeks assistance, to give her daughter a chance at the normal life she envisions for her, Farrington 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.