Patient Stories

Myles

I have been through it all with Myles. Not only does he fall into the 1 in 1,000 babies born with hearing loss but he has severe DDH. Unfortunately our ride has been a rollercoaster.

November 2018 we were given the first source of treatment, pavlik harness. My baby wore this for only 2 weeks to then find out it failed and he developed nerve palsy.

Between December 2018 and July 2019 we were given 6 dates for closed reduction surgery. This was what every parent fears the most, surgery. All 5 dates were cancelled due to trauma cases coming in the same times my son was scheduled to go in for surgery, now that’s what you call bad luck. Finally, the 6th date came around, Thursday 4th July.

We met with the surgeon who had told us after Myles having an X-ray upon the last visit (due to it being so long with no treatment) he needed to see where his joint was lay. He said he was confident he could proceed with closed but wanted me to sign a consent form to say if closed doesn’t work he will do open reduction on the same day.

I bucked up the courage to take my baby into the anaesthetic room (don’t ask me how) after many tears, looking away and moments of breaking down I walked away from the anaesthetic room and the wait began.
My heart was in my mouth I couldn’t speak to anyone, I never wanted my baby boy to have surgery.

6.30pm came and we were called into the recovery ward. On the way there we saw the surgeon who told us he’d managed closed reduction, in front of everyone I shouted ‘YAY!’ They did the least invasive surgery on my son and I was grateful and I thought our nightmares were coming to an end.

I was wrong, so wrong.

Meeting with my son was like I was seeing a different baby, my son is the most placid child you’d meet, he doesn’t cry. In the recovery ward he was screaming and in so much pain. He had bruises on his arms and legs where they failed to put the cannula in different places, he was in his spica cast. We took him back to the ward where he needed a lot of pain relief they even considered giving him morphine at one point.

I knew I was in for no sleep, he was in so much pain and was so upset. A few hours later we were told he was going for a CAT scan to confirm everything was ok and in place.

My worries were confirmed.

The next day, morning – someone who works under his surgeon (a dr) came to see us and told us the devastating news that my sons hip was still out of the socket.

I felt so numb and angry hearing this as his surgeon told us he’d proceed with open if the closed didn’t work on the same day whilst he was asleep, why didn’t he?

We have now been told he will be having open reduction in September when he turns 1. Beforehand we meet with the surgeon again in his clinic.

I will not be putting my son through another surgery with the chance of it not working, I can’t.

There are so many outcomes to hip dysplasia and we have learnt 75% of cases closed reduction works, my son fell into the 1 in 5 25% that it doesn’t.

Our journey continues. I’m struggling to believe there is a light at the end of the tunnel right now as all we have been receiving is bad luck.