Courtney Farrington and Nathaniel Woodside have reason to be happy. Their daughter Harmoney Woodside’s clubbed feet have been corrected, and they saw their 13-month-old stand on her feet for the first time, albeit with the aid of a harness. For Farrington and Woodside, it’s all “baby steps” to correcting a birth defect known as arthrogryposis, a number of rare, nonprogressive muscle disorders causing stiff joints and abnormal development of muscles that Harmoney was born with.
“I was very happy … very excited,” said Farrington upon returning home on Saturday after a recent five-week stint in the United States (US) for Harmoney’s leg castings, and therapy.
During their most recent visit, Harmoney had her arms casted for the first time.
Since Harmoney has been seeing the doctor in the US, she has had 15 recasts done on her legs and her mom said she has seen improvements in her daughter’s legs.
“Even though Harmoney has not had any surgeries yet, I feel everything is coming together,” said Farrington. “Her legs got straighter, and they basically corrected her clubbed feet.”
Harmoney has started standing, with assistance. It was basically her first time standing.
“When she started standing without the harness, she was scared. The next day, with the harness, it was like she did it before. She was not scared at all.”
Farrington said she and Harmoney’s dad were happy.
During the recent stint, Harmoney has had to go through twice-a-week castings – a new cast would be placed on her on Tuesday and removed and replaced on Friday. Each time, Harmoney’s parents had to pay $300 and each therapy session the toddler engaged in also cost her parents an additional $300. Farrington took her daughter to therapy daily.
During this recent visit, Harmoney had casting done on her hands for the first time. The casting is from her wrist to her elbow.
Farrington said they are expected to return to the US on July 12 for Harmoney’s continued medical care and therapy.
“We’re not sure how long I will be there. If all goes well with her legs and arms, I will probably be there for two weeks.”
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.
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 Farrington said doctors did not think her baby would survive.
Having given birth in the midst of the COVID-19 pandemic, 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.
She told The Nassau Guardian that when she initially saw her daughter, she didn’t look like a normal child.
“One of her legs was basically bent across, she had clubbed feet and clubbed hands, and her head was touching her back.”
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.
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. And with the support of her 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 US.
In October 2020, she took Harmoney to Paley Institute in West Palm Beach, Florida. She said officials at the institute gave them hope.
With surgeries, Harmoney is expected to have a chance of an independent life. She is expected to be able to walk and move her arms. Without the surgeries, Harmoney will be bedridden.
Farrington said she and Harmoney’s dad are pleased with their daughter’s progression.
“Everything is going well,” she said.
But the parents have to travel with their daughter monthly for therapy – visits that can be anywhere from two to three weeks and even up to four to five weeks, as in their most recent visit – depending on which area the doctors are treating.
The medical institution does not offer financial assistance. Harmoney’s medical expenses have to be paid for out-of-pocket. The toddler’s parents have made an appeal to the public for assistance through crowdfunding. A GoFundMe account created on March 16, has seen $15,060 raised of a $500,000 goal from 267 donors.
Farrington said some people have also opted to make donations directly to the medical facility.
When Harmoney undergoes surgery, the first two surgeries have been estimated to cost over $500,000 – and will be followed by surgery on the toddler’s wrists and possibly her shoulders.
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, Farrington said she is glad her daughter was not born with problems that aren’t rectifiable.
She also describes Harmoney as “funny” and a child who “talks too much” and who, at the same time, 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, 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.
The post Harmoney’s baby steps appeared first on The Nassau Guardian.
source https://thenassauguardian.com/harmoneys-baby-steps/
No comments:
Post a Comment