{Read Part 1 of Penny’s DDH Story here}
We went back into hospital for an ultrasound scan of Penny’s hips a couple of weeks after her Pavlik Harness was fitted which confirmed she had moderate Developmental Dyslasia of the Hip {DDH} in her right hip and severe in her left. Although they were repeating what I already knew and I knew the harness wouldn’t be removed anytime soon it still felt like another punch to the stomach. Seeing my tiny baby clamped into the scanning machine. Listening to her cries. Again feeling so useless.
We would then come back to the hospital every 2 weeks to have her harness re-fitted and so she could have a bath. This was to become our routine for the foreseeable future. Those bath times were so precious. She loved being in the water and to see her harness free was heavenly. I’d spend some time cuddling her afterwards before a new harness was fitted and she would scream the house down {she became well known in the hospital for the Penny scream!} The staff became friends and I actually still miss going in strangely!
Those early days felt incredibly lonely. It felt like me and Penny against the world. I was fiercely protective of her and the harness meant people often shied away from changing her nappy, dressing or even holding her. In fact I think I was the only one who ever changed her during those early months! I desperately needed information and support. Someone to tell me everything was going to be ok, we would get through this and Penny would be fine. I decided to share her diagnosis on Facebook and Instagram, partly to put it out there but also as a way of desperately seeking some kind of help. Silently reaching out for comfort so that I wasn’t as alone as I felt.
I did a search of Facebook groups and that was when I came across DDH UK Charitable Trust and Hip Dysplasia Support Group. I posted a picture of Penny and our brief story. The replies came instantly. The sense of support, understanding and solidarity overwhelming. Vicki Psarias {from Honestmum.com} commented on my Instagram post that her friend Natalie Trice had written a book about DDH. One quick Amazon search later and it was purchased. I suddenly felt like I was starting to surround myself with an armour of information. Although I must admit it took me a while to turn the first page of the Cast Life simply because doing so made it all so real. I wanted information but was also happy in my little bubble coping with one day at a time.
We were discharged from hospital after 3 days. Although they had visited us everyday in hospital I waited until we were home to show the boys {who were 3 at the time} Penny’s harness properly; explaining that she had poorly legs so needed to wear this to help make her better. They accepted it and that was that. I think their acceptance and matter of fact attitude helped us to accept it too. We would get through this. This was absolutely the best thing for Penny and it only made her even more special. Whatever the future held we would be ready for it.
We soon got used to navigating the harness and what we could dress her in comfortably {mostly sleep suits and vests in the next size up and rompers with long socks}. People would notice her legs were in a strange position and sneak a peak at baby weigh in days when her full harness was exposed. Some people politely ignored it whilst others asked questions. I didn’t mind either way. I was happy to talk about it and answer people’s questions as best I could.
However hard it was to accept and to see our tiny baby strapped up we quickly realised from hearing other parents’ and patients’ stories that we were incredibly lucky for such an early diagnosis. The chance of a positive prognosis of a Pavlik Harness working from a very young age is much higher and we were incredibly lucky that after 4 months of wearing it 24/7 {hospital baths aside} it worked. She did not need to undergo surgery or wear a spica or rhino cast as so many children do. The condition is not life threatening but left undiagnosed it would be life altering and living through treatment certainly is for so many.
At Penny’s third hip scan it was confirmed her hips were normal and healthy. I could have kissed the consultant! She would be able to have the harness off the day before she turned 4 months and in time for Christmas. I had butterflies in my stomach the day we went in for removal. What if they decided that actually she needed to stay in the harness? Or that actually it hadn’t worked and she would therefore need surgery. I even convinced myself we would be told she would go in for surgery that day! But thankfully no. The harness was removed and everyone was visibly genuinely happy for us which was so lovely! To get her dressed without a harness, to feed and strap her into her car seat, to be able to bath her at home! To lay her down and let her kick her legs for the first {proper} time. She was so long! The boys kept telling everyone Penny’s poorly legs were better 🙂
We are now nearly 5 months on from removal and Penny is amazing. She can confidently sit up and roll from there onto her tummy. She rolled over from flat on her back for the first time last week! She loves standing up {with support} and is starting to get on the move {mainly backwards!} She’s able to do everything a baby with healthy hips can do, although we were advised not to use baby walkers or jumperoos and we only use carriers which have been approved for hip health.
We have Penny’s 6 month check up next month and I pray that her hips remain healthy. I have kept her first ever harness so I can show Penny when she is older and as a reminder of the journey we have been through. She is our strong hippy baby, our little warrior, our wonder woman. My hope is that she will develop and grow without anyone ever having to know she was born with under-developed hips. A story she can tell if she wishes. Part of, but not limiting, her life story.
In conclusion I’d like to thank all our friends and family for their support and all the staff at Gloucester Royal Hospital who were fantastic throughout Penny’s diagnosis and treatment {a special shout out to our friends in the plaster room}. I’d also like to thank Natalie Trice for sharing her family’s story, setting up DDH UK to help so many families and also for her personal support.
{The Plaster Room staff at GRH} | {Penny’s first home bath}
To all the hippy families out there check out Natalie’s open letter guest post Dear {You} and know that you’ve totally got this 🙂
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