As a parent, you never want to “choose” to go through painful procedures and surgeries. However, when parenting a child with special needs, one has to weigh pros and cons of various therapies, tests, procedures, surgeries, medications… the list goes on and on. And when your child is functioning well overall, the decisions can be even more difficult.
As a parent of a child with cerebral palsy, these types of decisions are practically part of everyday life.
My daughter Mila has cerebral palsy – more specifically she has right-sided spastic hemiplegia (right side of her body is impacted) with dystonia. Her entire right arm/hand and leg/foot and even the right side of her mouth have abnormal muscle tone – usually tightening instead of moving in the intended manner. This tone abnormality is the result of the damage to the left-side of her brain. The brain injury is likely the result of a neonatal or in utero stroke, but we will probably never know for sure.
My daughter is a feisty, strong-willed, tenacious, resilient, and determined young girl. She even showed signs of these personality traits during her first weeks at the orphanage after being found at six months. I like to think that this is what made her a survivor – when it came to dealing with stress you either fight, flight or freeze – and Mila was a fighter.
I truly believe her fighting personality and demand for attention caught the eyes of the orphanage nannies and director – she fought to be taken out of bed and given freedom to move (even in a walker), fought to stand and walk despite her obvious tight leg muscles. She received daily therapy, which I know maximized her potential to walk, run, and even climb stairs.
In June of 2013, I have to be honest – I was amazed at how well she walked and ran, even though her gait was uneven. Every time she would move run around, I was convinced she would fall. But she didn’t. Turns out she adapted to her own body and made things work for her. However, as with many challenges with cerebral palsy, these adaptations (or work-arounds) do not bode well in the long run. Improper movements and positioning such as toe walking and walking with a wide swing (resulting from tight hamstring, ankle, and calf muscles), skipping and even running (it is far easier to run than to walk properly) will result in improper alignment of limbs and hips, shortening of bones, pain, and long-term poor functionality. Her uneven gait also places her at higher risk for scoliosis or curved spine.
However, my strong-willed and determined daughter is active and incredibly mobile. She wears an ankle-foot orthotic (AFO) to keep her heel down. She sees physical, occupational, and speech therapies both outpatient and in school to help improve muscle control and movement. She also has pain-staking Botox injections in her arm and leg every 3-6 months to help overcome the muscle spasticity.
And, most of all, she is happy and independent, loves dance class and skiing and all general running around and play that other six year old kids love.. and rarely complained of any pain.
So why would surgery be needed?
Because of the Mila’s improper gait and muscle tightness, her right hip has slowly progressed out of the hip socket. This is called hip dysplasia and is common in kids with cerebral palsy. Her hip, groin, and hamstring muscles have been too tight for so long that the ball of her femur was not sitting the socket of her hip completely and eventually she would likely dislocate her hip.
Mila’s hip had progressed out of the socket enough that her leg swung out wide and her foot went sideways as she walked. Her gait, even though she always got to where she need to go or what she needed to do, was incredibly abnormal. With the beauty of modern technology, Mila had a computerized gait analysis, showing the significant differences in how she used her right and left sides of her body and how little she actually stepped on her right foot, even with the AFO. Additionally the muscle tightness has also resulted in ongoing toe-walking and shortening of her right leg, so on top of needing hip surgery, she would also need hamstring and ankle lengthening.
So, down and dirty, she was scheduled last summer 2017 for multiple procedures to both lengthen and loosen her muscles and put her hip back in place. The surgical procedures are called femoral varus derotation osteotomy, gastrocnemius lengthening (hamstring), and ankle lengthening/release. It took about four hours to place the head of her femur into the proper position in the hip socket and lengthen various leg muscles with the hope of maximizing the length, mobility, and strength of her right leg. After surgery, she was in a customized hip immboilizer and lower leg cast.
She was immobile and non-weight-bearing for 6-8 weeks and lived with a cast on her right lower leg cast for the hot summer. We chose surgery in the the summer so that she would not have to miss significant time in first grade.
It was rough and tough, I won’t lie. It was agonizing to see her in pain and worse to see my active and joyful daughter be so immobile and sullen.
Was it worth it?
The summer of 2017 became the summer of healing and survival. Even as a pediatric nurse with many years of experience, caring for my own child – who went between being in pain and being bored at home in bed or wheelchair – was quite a challenge. We resorted to weeks of Sofia the First and an assortment of other Disney and animated shows as distractions. The muscle spasms proved to be the worst of all-unpredictable and sudden, treated with anti-spasmoticsn and Valium. No real baths or shampooing for weeks, so hard for a kid who can spend hours in the tub! And no swimming until August… after she was out of the cast.
Traveling in the car required the use of a specialized car harness to allow Mila to lay securely in the back seat. Needless to say, I got quite a work out lifting my 70 pound child in and out of the car for seven weeks. But we survived the boredom and sadness, the pain, sweat, and tears. And she has thrived ever since.
So was it worth it? The answer is a resounding Yes.
Mila’s femur head is now seeded beautifully in her hip socket. She no longer walks with a wide swinging leg. Her limp is still apparent due to the long-term growth restraint of her right leg, but luckily there is a short-term and long-term plan to address this issue. And she can pull her foot inward and ankle/heel down when she walks.
Once she was allowed fully out of the hip immobilizer and the cast was removed, her joyful and enthusiastic self starting to find her way back. She did spend a few additional weeks using her wheelchair as needed, but within two weeks of going back to school, she decided she wanted to leave her wheelchair at home. These accomplishments have taken hours of therapy and use of her AFO still, but the quality of her walk and positioning will hopefully preserve her long-term functioning. She can climb rope ladders and bridges with ease and joy. She has even skied, resumed ballet class, and participates fully in a 5k walk! She is back to swimming too and learning to kick and move her hip the way it should move. And for the first time in years, she no longer required the dreaded Botox injections in her hip, ankle and leg!
As we approach the year mark of this surgery, I can look back and know the right decision was made. Mila amazes me every day with her determination and resilience. She understands now what she also has to do to keep her leg working the way it should. Most likely she will have future procedures and surgeries to improve her quality of life and movement and to prevent potential progression of her orthopedic and muscular issues and the associated decisions will be hers to make as she grows into adulthood. I can only hope that the decisions I have made today will provide her with the foundation to make her own medical decisions.
Thankfully, because of this experience, I know my brave and strong daughter can and will thrive, whatever comes her way.
– guest post by Vicky