We were planning a special party that weekend to reveal the sex of our new baby to our family and friends. As the ultrasound technician pressed down on my belly, we anxiously tried to make out our baby on the computer monitor. Suddenly, she stopped and asked the obstetrician to come into the examination room. We knew something was wrong. Our hearts dropped.
I was 24 weeks pregnant when we learned that our baby had spina bifida, which means she had an opening in her back and that her spinal cord was exposed and leaking fluid in the womb. Nothing could prepare us for news like this. As no two cases of this condition are the same, we had to wait and see how Charley’s nerves and muscles would be affected as she grew up.
Soon after Charley was born, she underwent surgery to close the skin over her spine. Two weeks and a few operations later, our precious baby girl came home and we started our journey together.
Life with Charley has its ups and downs. Each week is filled with medical appointments and therapy sessions. Luckily, she’s always been on track with talking, fine motor play, and social interactions. But the muscles in her lower body are weak, and she has little sensation in her legs. As a result, she needs a walker or full leg braces to stand. And every time she’s sick, we worry if it’s related to spina bifida, or simply typical childhood ailments such as teething or a cold.
The MAB-Mackay has played an essential role in helping Charley catch up on the important milestones she’s missed. She’s gained the strength to hold her body up through physiotherapy, learned to eat regular table food like the rest of the family thanks to feeding therapy, and is learning to get dressed on her own with her occupational therapist.
We feel so well supported at the MAB-Mackay. Family is always welcome – even “Nana” is involved in the sessions. Charley never tires of the work presented to her in fun and different ways, designed to help strengthen her and increase her endurance without being boring and repetitive.
As her parents, it’s important to us that Charley not feel left behind or excluded while the other children are running or jumping around.
Charley just turned 3 years old, and is full of sass and spirit. She loves to play with others and make them laugh. She’s always surrounded by her many friends at her daycare, and tries her best to keep up with her big brother Liam. But she’s starting to notice that in some ways she’s different from the other children her age.
Since crawling is still her main means of mobility, her physiotherapist suggested we buy her a firefly scoot. This wheelchair-like rider gives her the ability to self-propel and keep up with her peers. She’s even used it at a splash pad this summer – it brought tears to our eyes to watch her following the other children through sprinklers, delighting in this activity that would otherwise be out of her reach.
We weren’t able to try the scoot before investing the $1,000 to purchase it, and are happy that it’s so perfect for Charley. In fact, we were proud to show it to the family of another little girl with spina bifida, to see if it was appropriate for her before they bought their own. I know the MAB-Mackay is trying to create a lending library of items like this, which would be a great help to so many families struggling to raise a special needs child.
There is no cure for Charley’s condition. But we’re confident that our wonderful team at the MAB-Mackay can help Charley overcome almost any obstacle that comes her way. They’re doing everything possible to ensure that she’ll never have to feel like she’s not good enough or not “normal” as she grows up.
The MAB-Mackay will be giving Charley her first wheelchair any day now, which will provide her more independence when outside and for long distances. They’ve also loaned us a standing frame so she can develop her core strength and help with her bone growth by bearing weight, as well as posterior walker to promote her walking skills for short distances. We know they’ll be by our side as she prepares for the challenges of integration to kindergarten in a few years.