Tell us about your family…
I’m Alexandra and I live with my husband Matt, son James and daughter Olivia, in Halesowen in the West Midlands.
Olivia is your star – tell us her story…
Having had a normal delivery in hospital Olivia was born on her due date. The following day prior to us leaving the hospital, the midwives came to do the newborn checks and noticed that Olivia had a slight clunk in her hip. They got a second opinion and agreed to just get her checked at a 6 week check up. We thought nothing of it (it was indicated that most children grow out of it). We were just overjoyed with our bundle of joy and my son was so excited to be a big brother, we couldn’t wait to bring her home and be a family of 4!
At the 6 week check up at the hospital I thought it would be a quick in and out check, so hubby stayed in the car with our eldest, as we assumed all would be ok, however, that appointment is one I won’t ever forget, upon having the ultrasound done, the Sonographer turned and explained that unfortunately, our little girl had severely dislocated hips. In that moment, I broke down. He nipped out of the room to get the lead consultant (whom has been nothing but incredible throughout the whole process, from that very day right way through Olivia’s DDH journey, we are incredibly grateful to him), who explained what DDH was, what the treatments would involve and there and then, our little hippy warrior was popped into a pavlik harness for the start of her treatment.
To say the next couple of weeks/months were tough, whilst we know that DDH cannot be prevented and it was nothing that either my husband or I could have done, as a parent, it’s natural to feel a sense of blame and guilt.
Following the pavlik failing, Olivia went in December 2018 for a closed reduction, we were advised that bilateral DDH (both hips), is for an unknown reason or explanation, trickier to treat, closed reduction was the next step, we cling to some hope that it would work, my daughter went to theatre came back and was placed in a hip spica, we were thrilled at the prospect that it may have worked, however, our consultant came round that afternoon and advised the next 24 hours were vital, he stated her hips were very unstable and if they were going to redislocate, it would be most likely too within that 24 hour period. Needless to say, the MRI showed that the next day, they had indeed popped out.
We then prepared for the next phase, an open reduction, a more invasive procedure, we were just as nervous as first time but knew it had a higher chance of being successful.
Olivia came round from surgery and was amazing, she had no adverse affects from the anaesthesia and coped well with the pain relief, she was a little tired and hungry and whilst she was a little swollen and sore, she adapted amazingly and the wounds healed perfectly.
We, as a family, had to adapt to her life in a spica, hiring car seats, renting hip spica tables, everything we could to ensure her 3 month cast life would be as comfortable as possible, we were worried about how we would adapt but it’s amazing, how quickly you adjust, we were soon hip spica nappy changing pros! Picking her up, whilst the added weight of the cast took getting used too, it soon felt second nature!
You worry about milestones, however, Olivia soon learnt to army crawl in the cast and there was no stopping her!
We initially thought 3 months would last an eternity but it went by so fast!
What’s the current situation with Olivia? What does the future look like?
Olivia had her cast removed and the scans showed her hips seemed to be going well, so she was placed into an abduction brace, in the two weeks she has been in it, she has learnt to stand up! Whilst the brace is on 24/7, we can take her out of it for nappy changes and bath times, It’s so nice to be able to bathe her again!
We have been warned that we aren’t out of the waters yet, we have to monitor how her sockets grow over the next 6/12 months as her ball and socket were completely separated and her socket is shallow.
As of writing this, we have a couple more weeks in the brace, then we hope she can be weaned off it and potentially just be in it for nighttime (just in time to celebrate her first birthday!)
What do you wish you’d known before?
What we have learnt along this journey, is to take each appointment as it comes, accept that it is a lengthy process, that further surgery and or treatment may be required but that we are grateful that it was caught from a young age, that all the treatment is too make her better in the long run.
In addition, more awareness of DDH, upon carrying newborn checks at hospital, if a baby has clicky hips, just a bit of information on DDH, just enough to raise awareness and help prepare that it could be DDH.
Can you offer any advice to others in a similar situation?
Support groups on social media, such as Steps charity and DDH UK have been invaluable, being able to see other peoples stories and experiences and being in a position, to now share our story and help others’ has been a massive help along the way. Knowing you aren’t alone and that there are others to talk too is incredible.
Is there anyone you’d like to mention or thank?
We cannot thank our incredible consultant/surgeon (Mr Bache) enough, he has been incredible throughout Olivia’s journey. To all the incredible staff at Birmingham children’s hospital whom have cared for us all during our visits, their help and support has been invaluable.
Our friends and family for their continued support throughout and during some of our toughest times 🙂
Anything else you’d like to add?
If anyone is just starting out on their DDH journey, or going through it, I’m all ears and would be happy to talk to anyone who wants to chat, I’m happy to share our experience, offer advice from personal experience and just be someone to chat too about DDH and offer support if I can help 🙂
Please don’t hesitate to ping me a message anytime over on my Facebook page below 🙂
Where can we follow Olivia’s progress?
Follow Alexandra’s Facebook page here.