Toby’s Story

Our son was born preterm at 32 weeks weighing 1.8lb. We had a really difficult pregnancy of being told lots of awful scenarios. The pregnancy however was not a risk factor for hip dysplasia. Toby had a full body X-ray at 5 weeks old (37 weeks gestation).  That would be the only time his hips were looked in the next 10 years through imaging.

It’s a shame really as I imagine they thought it had already been checked due to this, but in reality his bones would have been too immature to show. He had a really difficult time on neonatal and spent nearly 3 months. His past is complicated and long so I will mainly focus on his physical progress and anything relevant to his hip problems.

Toby has needed physio on and off since 2 months old. At the start he was recorded and we were told his movements were immature and uncoordinated.  His left leg was rigid, and they were unsure if he would walk. He started physio promptly and I made sure I did therapy with him daily. His progress was delayed but was really good, and he did every milestone but a little later. With a lot of work he wobbly walked at 19 months – incredible!

Toby was signed off physio at around 20 months. He started school at 4 years old, and to the teacher his physical difficulties were obvious. He could not sit straight, he couldn’t jump or run properly and he couldn’t keep up with his friends. He was referred to physio and had intense physio daily at school and at home for over a year. The physio picked up on his tight muscles, that he could not lean out of his centre, had very poor stomach muscles, hyper mobility, and weak legs.

He was signed off at around 5.5 years, and at 9 I referred him back. He was getting a lot of leg pain, his left leg kept dropping, and he again wasn’t sitting straight. Again intense physio was needed. Same problems picked up. We started the same physio programme – dejavu!

After a year we noticed a pattern. Toby has never been a sit-down-all day-boy!  He has always been active but normal activities were not enough – he needs to be extremely active to build his low muscles up! His joints are not supported if his muscles are weaker! This caused him pain, meant he could not keep up with friends and have a normal life of a child. He has low muscle tone and hyper mobility due to a growth condition called Russel silver. He does have the added bonus of growth hormone – Taken daily by injection. For us this wasn’t just about growth (well he had a spectacular response and now is not small) but his muscle development. It has helped a lot and I do wonder how he would be without this added boost.

At 10 he was diagnosed with hip dysplasia after an X-ray to look into a lateral tilt. 3 years it took me to get anyone to take it seriously! Initially we were told he needed surgery in the next 6 months! – femoral and pelvic osteotomy. But after 2 multi meetings and an MRI it was decided no surgery yet as they didn’t believe it to be unstable and he had no pain. We were transferred to a city hospital. Told his hip dysplasia was significant and they will wait and monitor. He has a centre edge angle of 10 on left, a broken Shenton’s line and femur has coxa valga. His right femur is borderline but unlikely to need any action for this one.

At age 11.5 Toby started waking through the night with groin pain, and he started to complain after running/changing direction. He had low left back ache (which he’s had for years). We were lucky that we knew where it was likely coming from so he had a steroid injection under general anesthesia into his left hip joint. It hurt for a few days but then provided relief.  His back was pain-free.  This wasn’t something the surgeon expected, and likely meant his hips been bothering him for years. The surgeon wanted the PAO, but he is too young as his growth plates are open. A multi meeting decided that a femoral osteotomy was the preferred op for this time. He has coxa valva so he would have an operation called a Varus proximal femoral osteotomy – basically tilting the femoral head in by correcting the valgus.

Toby had this surgery at 12.2 years old. He stayed in hospital 5 nights. His pain meds were an epidural but it failed to work on his hip and instead numbed his right foot so much that it caused concern as he lost all feeling and movement. Luckily after it was turned off it gradually came back. He had diazepam for muscle spasms, paracetamol, ibuprofen and Morphine on continuous pump and bolus.

I regret not keeping him in the hospital until he was freely moving with crutches. When we got home he was in a lot of pain and his left muscles decided to go to sleep. It took 2weeks for his leg to be able to move to the side at all. The surgeon said after surgery they had to move more muscles than usual due to muscle placement being different, so this will cause more weakness. They also had to shorten his leg a little.

Unfortunately, for Toby, not being active causes muscle weakness. Over the 2 weeks of just using a walker – but mainly being stationary – he was too unbalanced for crutches.  After 4 weeks I started to panic about the long term risks of him being inactive. I asked around and purchased tripod walking sticks for children. This has been a game changer and he started to move around more. He was 50 percent weight bearing after surgery so this offered the balance he needed. He was still slow and it tired him out, but it meant he could wake his muscles up and his brain could learn their new position.

We have noticed during his physio that after 2-weeks of tripod walking he has so much more movement in his left leg. He can lift up and out /in. As I write this Toby is 6.5 weeks post FO (femoral osteotomy). He is 50/50 with wheelchair and tripod sticks as he gets leg pain due to muscle weakness/ tight muscles and tires easily.

His 6 week review showed great bone healing! He is allowed to start to put more weight through it. By 3 months he’s to be fully weight bearing by gradually building up to it. The surgeon did have him take 3 steps unaided and he did it – very very limpy and wobbly but he did it. We do try some steps at home from time-to-time, but I think until his legs are levelled it will be tricky. He is also not to fully weight-bear for more than this at this time.

Toby also has around a 2 cm leg length difference. The surgeon wants him to have 1cm bottom of shoe and 0.5 in shoe so not to overcorrect. He’s to have his longer leg growth plate stopped near final height to allow for even legs. I’ve been trying this out at home and 15 mm seems ideal for him. If this is the case we may not do surgery. He’s never had leg X-ray to measure, fingers crossed they allow!

Toby is tricky as his pelvis rises on his shorter side due to spinal alignment to pelvis. No one knows why, but it’s been suggested it could be muscle asymmetry. Levelling his legs won’t be as straight forward as it’s getting the balance of making him tilt-free but not lifting his pelvis up too much. I will hopefully update his progress from this surgery and update as more surgeries happen in the future.

April (mum of Toby) South west England, UK