I hate writing this. I hate saying this. I hate even thinking about this.
The “this” I’m referring to is Solly’s upcoming hip surgery.
I’m almost in tears even writing these words, though I’ve known it was coming for many months now.
Solly is having bilateral Varus Derotational Osteotomy (VDRO) and a left-side Pelvic Osteotomy surgery in mid-November.
And I’m having trouble coming to terms with it. Or, maybe more appropriately, I’m having huge amounts of anxiety over it.
This is the highly invasive surgery that we did everything in our power to postpone or avoid altogether by undergoing SPML when Solly was 2 and a half and later SDR and adductor lengthening surgeries when he was 5. We knew it was a likely event, but like everything else when parenting a child with a disability, we hoped and prayed that he would be the one exception that could avoid it.
That wish turned out to be a big fat “nope”.
The background: Why do kids with cerebral palsy often face this surgery?
In short, Solly needs to have this surgery because he has hip dysplasia. His hip sockets are super shallow and the head of his femur, or thigh bone, doesn’t fit properly inside his hip sockets. His right leg is about 30% out of the socket and his left is over 50% out.
Oftentimes, when kids have diplegic (involving both legs), triplegic (in particular, those involving two legs and an arm), or quadraplegic (involving all four limbs) cerebral palsy, the tight muscles of the legs pull the legs out of the hip socket. For Solly, this started occurring when he was around 2 years old, but SPML plus alcohol blocks, which relaxed his legs, allowed for his hips to go back in the socket. Once the alcohol blocks from that procedure began to wear off, his hips began to slowly sublux again. Solly had SDR once we understood that his hips were beginning to dislocate again, however because his cerebral palsy is spastic and dystonic, and SDR only solves for spasticity, this only slowed the dislocation. It was not an effective solution.
What does the surgery entail?
VDRO and the pelvic osteotomy are essentially hip reconstructive surgeries. The St. Louis Children’s Hospital’s website provides a much better explanation of the surgery than I could ever describe, and that can be found here: https://www.ortho.wustl.edu/content/Patient-Care/3201/Services/Pediatric-and-Adolescent-Orthopedic-Surgery/Overview/Hip-Education-Overview/Femoral-Varus-Derotational-Osteotomy.aspx
Some doctors will do a lower body cast after the surgery to protect the hips, however we opted to go with a doctor who provides removable leg braces and an adductor pillow wedge post-surgery. Solly will wear these for about 6 weeks after surgery and will not be able to bear weight for that amount of time.
Will the surgery help Solly?
Yes. The first orthopedic surgeon in Los Angeles who told us we needed to consider surgery said the procedure was primarily to minimize pain, particularly as Solly grew. However, as I read through that particular doctor’s clinical notes I realized that he did not listen to my accounts of Solly’s progress and ability and noted that he had not made any progress throughout the prior year and, for example, only walks in a gait trainer while at therapy. His plan was to just do the bilateral VDRO and place Solly’s hips at a severe angle to keep them from dislocating again and requiring repeat surgeries. The “severe angle” piece did not sit well with me and I read his plan as an action that could hinder Solly’s physical development. Those notes prompted me to seek out a second opinion, particularly at the suggestion of an adult with cerebral palsy who went through this surgery twice.
According to the doctor who gave us our second opinion and who is the doctor that will perform the surgery, the combination of VDRO and pelvic osteotomy will not only help minimize any hip pain as Solly gets older, but the addition of the pelvic osteotomy should help stabilize his pelvis so that he can walk without scissoring and hopefully get stronger in all of his ground and weight-bearing abilities. As with all things related to cerebral palsy, we remain realistic that this surgery will minimize any joint pain he might have as he grows up and are hopeful that it will help our goals of allowing Solly to become as independent as possible.
So, what’s next?
Solly has to get a number of sign offs in order to proceed with the surgery, most notably from a hematologist. Our worry with an orthopedic surgery that requires six weeks of immobility is the formation of blood clots, particularly since Solly is a stroke survivor and has several blood clotting disorders. We’re hopeful that the hematologist will sign off on the surgery and provide guidance so we can mitigate any risks associated with blood clots.
Once this happens, we’ll go through the surgery in mid-November and plan to celebrate by removing the leg immobilizers and adductor wedge on Christmas Eve, which is exactly 6 weeks post-surgery. I’m planning to take Solly to his weekly speech and occupational therapy appointments starting about 10 days after surgery rather than break from all therapy. Solly’s NAPA Center therapists are his favorite people and wheeling into the clinic, for Solly, is like going into “Cheers!” – we simply couldn’t keep him away for 6 whole weeks! However, he will be taking about 6 weeks off from physical therapy and will start up again at least once per week as soon as we get the “ok” from his surgeon. We’ve already set up intensive therapy at NAPA for February 2022 so we can hit the ground running and start working on building up his strength post-surgery.
As I indicated when I started this post, the news of this surgery is devastating to us. This surgery is known as one of the tougher surgeries in the CP world and one that is particularly painful and rather difficult to bounce back after. I try to remain positive, but it’s really hard to not imagine the worst-case scenario. I think, as parents of a disabled child, whenever something is going well, we’re all consciously – or subconsciously – waiting for the other shoe to drop. So, with that, I’ll close out with a promise to either post an update or two here on Solly’s blog or on my Instagram account as we go through the surgery and recovery.
Wish us luck.