Maggie’s birth story started as many do, but strayed off course when the water was broken and her heart rate decelerated drastically. Rushed into an emergency c-section where she arrived moments later without breathing and had an umbilical cord with not only one, but two true knots, wrapped around her neck. Upon making her descent, the umbilical cord had cinched. She was immediately sent to the Neonatal Intensive Care Unit and placed on a ventilator. She was taken off the ventilator when her oxygen levels normalized- this took a couple hours, but was under an oxygen hood for a couple of days. Maggie was finally held by her parents when she was 3 days old, a wonderful day! By day 5 she graduated from the incubator and most of the wires to a crib where she fortunately did not “crib fail”.
After all the care and with an immense amount of prayers that literally went around the world, Maggie was discharged from the NICU at 10 days old. She was given a head ultrasound sometime before discharge that came back “normal.” No further tests were conducted to confirm that any neurological damage had taken place. She was too young for any deeper scans such as an MRI, so with the exceptions of careful monitoring of milestones, Maggie was treated like any other baby.
The first few months were fine, Maggie was smiling, cooing, holding up her head, but by 5-6 months it was becoming apparent something wasn’t quite right. Not all babies sit up right at 6 months, but she had very little trunk control and could barely prop sit or even sit properly in a Bumbo. She couldn’t grab toys very easily and swatted at them before catching them, sometimes without success. She was referred to Early Intervention and started therapy when she was 8 months old. The EI system in Birmingham sent the therapists to the child’s home where they could learn in their own environment until their third birthday when they aged out. Everything was going great- Maggie learned how to come to mid-line (bringing hands together in front) and cross mid-line (reaching across the chest for something) where she could not before. She was able to sit for longer periods and even free a hand to play and many other little things taken for granted in a normally developing child. When Maggie was almost 11 months old, she grabbed a spoon from her mother’s hand and brought it to her mouth in a smooth motion; it was clear she was able to start working on self feeding, but with larger foods she could hold, like a bagel. All this worked for awhile but she eventually stopped feeding herself because it was too hard. Although she worked on it, Maggie never fully mastered a pincer grasp, thus making self-feeding increasingly more difficult.
Her first neurologist visit was at 11 months old, which was only delayed by the volume of people in the system. The doctor said she did not have CP but that she had suffered from watershed injury, most likely in utero as a result of the knots in her umbilical cord. Not knowing when the knots were formed, he said it couldn’t have been early in development or she would be a much different child. Therapy continued- her diagnosis not changing the path her therapy needed to take. She still needed to learn to sit and crawl and play with toys, etc. When Maggie’s six month follow-up appointment with the neurologist arrived, things changed quite a bit. The Neurologist diagnosed her with Athetoid Cerebral Palsy, a definite shock to her family as a stark contrast from the initial visit.
Around 18 months Maggie discovered the W sit after getting into the fetal position and pushing her body off the floor. This is a posture reached by sitting with both feet out and to the side with her behind on the ground. This was how she predominantly sat from then on. She still worked on proper floor sitting, but was able to check sitting off her goals as accomplished through the W sit. Shortly after this discovery, she started pulling up in her crib, moving all over in a little W crawl and generally discovering more things. Her PT also brought in a walker for her to start practicing.
Over time it became more and more difficult to have her sit on her bottom, usually leading to her fighting for her preferred posture. She couldn’t independently support herself in the walker so we were advised to use a gait trainer instead. Maggie was allowed to pick her own color and chose pink, of course. It started out hopeful but in time she started using the trainer to glide from place to place rather than walking. Upon turning 3 and transferring to the school system it was advised to get a wheelchair for Maggie because her Pre-K class is a long walk from the playground and children would see her as a baby if she used a stroller.
Throughout it all, Maggie continued to progress and seemingly make strides with development, which were attributed to prayer from family and friends and all her hard work. She worked with physical, occupational and speech therapists about 8 times a month and after moving from Birmingham to Nashville, she worked with therapists 6 hours a week. Even with her work ethic and therapists, she still lacked a lot of developmental skills necessary for independence. The general thought was “one day” or “if we all keep working” she would catch up but her movements were still all over the place and she couldn’t support herself in a proper sitting or standing position for very long. Even though it seemed like she was doing great, “especially” for a child with CP, something was missing.
There had to be more…