Penny was born in 2013 with Spina Bifida – lipomyelomeningocele; this was diagnosed by ultrasound at 30 weeks gestation. When she was born, no one was sure if she would have use of her legs or what other difficulties she might face. Luckily, she had very little complications at first and was able to come home after 5 days spent in the NICU.
As Penny grew, we noticed that, although she had some use of her legs, she was not able to stand or bear weight on her legs. She had intensive physical therapy but still was not able to stand independently. After undergoing multiple MRIs, it was discovered that Penny’s spinal cord was tethered* and would need to be corrected surgically.
She underwent de-tethering surgery at Sick Kids Hospital in November 2014; she was 13 months old. Due to some complications, an expected 4 day stay turned into 4 weeks. We were lucky to be discharged just in time to have Christmas in our own home. Although Penny’s surgery was successful, she is at risk for re-tethering.
Since then, Penny has made some excellent strides. After hard work with physiotherapists and occupational therapists, she is able to walk, run and jump on her own. She relies on special braces (called AFO: ankle-foot orthosis) to help keep her steady.
As well as mobility issues, Penny also struggles with continence. This is a common condition with Spina Bifida as a result of nerve damage. She requires extra assistance to go to the bathroom at home and has nurses visit her twice daily while in school.
Penny is followed by doctors at both Sick Kids Hospital and Holland Bloorview in Toronto. She undergoes MRIs and other assessments approximately every 6 months. She is lucky to have a team of doctors who specialize in Spina Bifida and who are able to provide targeted treatments and connect with supportive resources.
Penny is currently in first grade and is doing very well at school. She is socially active and enjoys music, art and gym class. She is an excited reader and enjoys using her active imagination. This is certainly helpful at home as well, as she is very good at playing with her little brother.
Penny enjoys being active; she has played sled hockey and t-ball. She loves to camp and play outside. Being on her trampoline or at the beach are her favourite things. She is also working hard to learn how to ride a bike so she can zip around with her cousins this summer. She has not let her differences hold her back.
*tethered: a situation in which the spinal cord cannot move freely inside the spinal column resulting in the cord is stretched. If untreated it can cause problems with bladder control, bowel control or walk. Surgery can release the stretching. (ED: from childrenshospital.org)