Jennifer Fecowycz was only 13 weeks pregnant when she learned her pregnancy was high risk. This didn't come as a total surprise as her previous pregnancies had their own set of complications with her older children being delivered via c-section. However, this time was different - Oscar wasn't developing normally in utero. He wasn't bending at his wrists, knees, ankles or elbows and Jen's doctors determined he would be born with Arthrogryposis.
Arthrogryposis describes congenital joint contracture in two or more areas of the body - deriving its name from the Greek language, it literally means "curving of joints." When Oscar was born he had club feet, his knees and elbows were hyperextended, and his wrists hooked under the wrong way. Because they had discovered the complications while Oscar was still in utero, Jen was able to schedule all necessary healthcare services as soon as he was born. This included surgery, casting, early intervention and therapy at Children's Specialized Hospital (CSH).
"Oscar began physical therapy at Children's when he was just six weeks old," said Jen. "The situation was overwhelming but the staff made it as easy as possible. Everyone was so kind and accommodating from the receptionist, to the security guards, to our therapist, Diana. Diana had actually just returned from maternity leave and Oscar was one of her first patients- she had some experience with his diagnosis but not a ton and I was a little apprehensive. However, any worries I had were quickly washed away as I witnessed the attention to detail and compassionate care she displayed in each session - she knew what to look for and how to respond to it even though he was just six weeks old."
Oscar began seeing Diana once a week at the Mountainside location from then on out. They worked on tummy time modifications because he couldn't bend his elbows when he was born, she taught him how to roll over when his casts were removed at six months, and just before this second birthday she helped him take his first steps. Diana also served as a friend and confidant to Jen, providing a listening ear and stepping in to speak with Oscar's various doctors to ensure his entire care team had the most up-to-date information on his diagnosis.
"When Oscar was born we were told that the only way he'd ever walk is if we amputated his legs at his knees," said Jen. "Children's Specialized made sure that was a decision we never had to make. Learning to walk was definitely the biggest obstacle he had to overcome but he did it with Diana's help. Oscar couldn't bend at his knees so it was obviously very difficult for him to walk, so they began by just having him stand and put pressure on his legs. Then because he had been in casts for so much of his life the bottom of his feet had to be desensitized which posed another barrier. However, the team at Children's continued to work with us each week, figuring out where his legs needed the most support and creating bracing options for his unique needs."
Today, Oscar is a typical 5-year-old boy who loves to spend time outside hiking, swimming, and throwing rocks into the creek. He also enjoys coloring, building with Legos, and playing with trucks, cars and dinosaurs. Oscar continues to work towards reaching his full potential, seeing Diana weekly and interacting with all of his friends at CSH.
"It has been a bumpy road but anything I was worried about in the hard moments worked itself out in time," said Jen. "My advice for parents going through a similar situation is to take a deep breath, be patient, and trust your therapists and the process. It can be overwhleming to hear the therapists set goals for three, six, and 12 months and worry that your child isn't going to hit them. But these goals are not hard and fast and your therapists work with you and your child every step of the way, adjusting the plan to meet your individual needs. I'm so grateful to Children's Specialized for all they've done for Oscar and our entire family."
