February 2022 AMCer

Lucy was diagnosed with Arthrogryposis Multiplex Congenita (AMC) at birth. Her 20 week ultrasound showed clubbed hands and feet. Her parents were told at later scans that her arms were stuck straight and stiff, but AMC was never mentioned. Lucy’s grandmother started researching online and it was suspected that Lucy had AMC, so the family started following online support groups.

Lucy was born via emergency c-section at 38 weeks due to her umbilical cord being wrapped around her neck 5 times. She weighed just 5 lb 6 oz and could only move her head. Her parents were shocked to find out that her legs were also stuck bent at the knees and up by her sides, as this was never mentioned at any of the ultrasounds.

When Lucy was one month old her parents took her to a local orthopedic hospital that supposedly specialized in Arthrogryposis. However, the doctors they saw did not want to start any treatment on her until she was 18 to 24 months old. Her parents were devastated to think she would be stuck the way she was born for up to 2 years. They heard about Dr. Feldman at The Paley Institute in West Palm Beach, Florida on the support group pages they were following and knew they needed to take Lucy to see him.

After lots of prayers and planning, they flew to Florida when Lucy was four-months-old for a consultation with Dr. Feldman. He was willing to start treatment immediately. They stayed in Florida for the next 8 weeks while Lucy received serial casting and daily physical and occupational therapy. She also had a tenotomy (a release of the tendon behind the heels), estim and astym therapy, and splints made for her arms/legs. She went home looking like a completely different baby! Her legs were no longer stuck at the knee and she was able to wear pants for the first time. She started kicking her legs and moving her arm independently. She also started pressing buttons on her toys!

Lucy continued to receive physical and occupational therapy local to her home twice a week but due to regression, the family had to return to the Paley Institute in August 2020 and again in February 2021 for additional serial casting and to have new splints made. She had her second tenotomy with Dr. Dobbs and her 23rd set of casts in March of 2021. During that time they also met with Dr. Feldman to discuss Lucy’s future leg/hip surgery that would be necessary in order for Lucy to walk. She had her first set of braces (HKAFOs) made during this trip and was able to stand (assisted) for the first time ever at 16-months-old. Later, with continued practice at home, she would stand unassisted for a few moments at a time.

For the next ten months Lucy continued therapy local to her home, while her parents planned her leg/hip surgery with Dr. Feldman. She started booty scooting and inchworm crawling around the house. She is very independent and likes to do things on her own. Her new favorite thing to do is close doors.

Lucy had surgery with Dr. Feldman on her right leg on January 18th, 2022 and her left leg on February 1st, 2022. Her surgery consisted of bringing her hips down into the proper position and shortening her femurs to completely straighten her knees. Lucy will now be in Florida for almost four months to recover from the surgery and receive intensive physical therapy which will hopefully help her learn to walk. It is also planned for her wrists to be casted during the coming months.

The family has done several fundraisers for this life-changing trip, but with the expense of staying in Florida for an extended period of time, while both parents are not working, they have requested assistance with Lucy’s medical bills, therapy sessions, and orthotics and are very thankful to Helping AMC Families for selecting them to receive assistance in February 2022!

Helping AMC Families is thrilled, through the support of our amazing donors, to be able to assist Lucy and her family with the out-of-pocket medical expenses incurred from her double leg surgery with Dr. Feldman. Helping AMC Families works directly with The Paley Institute to pay the balances due, up to the $5000 max available to the family, in order to try and help AMC families stay out of debt and focus on caring for their children.