As you know, I try to cover a broad range of parenting topics through the blog,
and I'm always honoured when people share their stories with me.
This is Grace's story, she has 2 little girls, both of whom have Hip Dysplasia.
Tell us about your family
Our little family consists of myself, my husband Luke, Mila (2.5 years) and Daisy (7 months). Of course I can’t forget our two fur-babies Jaffa and Monty.
When did you first realise something was wrong with Mila’s hips?
I first thought there was something wrong with Mila’s hips when she was about 4 ½ months old, but looking back now there were definitely other signs prior to that.
I first noticed that she had one leg longer than the other. Having just had our 4 month Maternal and Child Heath appointment, I figured that if something was wrong with her then it would have been picked up. However, it just didn’t sit right with me and, after ‘googling’ her symptoms, I just knew she had Hip Dysplasia.
So, a week before she was 5 months old, I went back to our Maternal and Child Health Nurse. She conducted some checks that I had never seen her do before (which I now know should have been done and may have picked up her Hip Dysplasia much earlier!), then the nurse told me to go to our GP immediately and get an ultrasound ASAP.
A week later, we had our ultrasound and the response from the sonographer confirmed what I thought - Mila had Developmental Dysplasia of the Hip (DDH) in her left hip. He called in his boss who immediately got us to have an X-ray. He told us it was one of the worse he had seen in a while.
What were the options once you realised Mila had hip dysplasia?
We were told by our GP that there was around a 6-8 week wait to be seen at the Royal Children’s Hospital so we decided that we would see a private orthopaedic surgeon, Dr Gary Nattrass (who we absolutely love!).
From what I had read about DDH, the earlier the treatment (before 6 months) the less chance that surgery would be required, so I wanted Mila to be seen ASAP.
A week later we had our appointment with the Specialist in Melbourne (there are none in Bendigo), I was prepared with all sorts of clothes for different braces he might put her in. I will always remember his words when he looked at her x-ray “that is a spectacular dislocation!”. He then stated that no brace could fix her hip as it was fully dislocated out of her socket, and sitting up rather high. Her socket was very shallow and she needed help to hold it in place to deepen the socket.
She was then booked in for surgery for an Open Reduction in 2 weeks time where they would make an incision in the groin and clear out her hip socket to allow the ball and socket to be re-positioned. She would then be required to wear a full body plaster cast (known as a spica cast) that went from under her armpit to her ankles with a small area in the groin area for nappies, for 6 weeks. After 6 weeks in the cast, she would then be required to wear a Rhino brace.
I was absolutely distraught that my little 6 month old girl would need to undergo all of this at her age, and cried most of the way home.
Did you find that there was enough information support for you?
Initially I was overwhelmed with what I thought was a lack of information on Hip Dysplasia and how to deal with a spica cast. I was given some information from the specialist who pointed me in the direction of Healthy Hips Australia. This website and Facebook page has an enormous amount of information in relation to prams, highchairs, bedding, car-seats, how to change nappies and entertaining kids in a spica cast or braces – all of which we had to make changes to.
Through Facebook I was also able to locate a number of groups specifically for Hip Dysplasia, which was an absolute lifesaver. These pages were full of extremely helpful and supportive mums and dads who ‘got’ what we were going through. Although we all knew it was not life threatening, it was life changing.
Having a child with Hip Dysplasia is very isolating. You grieve the lack or delayed milestones that aren’t reached because of treatment. You grieve the ‘baby year’ that is taken over with surgeries and braces and trips to Melbourne, and worrying what the next x-ray is going to show.
I found it hard to leave the house, not only because it was hard getting her in and out of the car and pram, but because of the looks people would give me, comments people would make loud enough for me to hear and even finger pointing. I also found other people didn’t really want to look after her.
Believe it or not though, I also had another mum in my mothers group who’s daughter also had Hip Dysplasia and was being braced at the same time. This mum and the other mums in my mums group were an enormous support to me, and always checked in on me to make sure we were travelling ok.
When Mila had to go into her brace for the second time, was it harder as she was older, or easier as you were all use to it?
It was much harder for Mila the second time to go back into the brace. From 6 months of age, she had been in a plaster case for 6 weeks and then into a brace for around 7 months. When she stopped wearing the brace the first time, she finally learnt to walk at around 18 months of age.
Three months later, she was put back into the brace as her hip was slipping out again because her cup was still shallow. This meant she had to learn to walk again in the brace, which took about a month. She was very angry and would try to hit and bite me and would cry a lot. Once she learnt to walk she was much happier.
I think deep down we knew that the brace wouldn’t fix her issues, after already having had surgery and bracing. We thought we were probably just delaying the inevitable, a second surgery, but of course we had to try the brace first. I was also pregnant with Daisy, so if we were to have surgery again we wanted to hold off until after we had Daisy.
Tell me about realising Mila needed a second surgery?
Mila was in the 2nd brace for 6 months. At the 3 month check there was a bit of improvement so we were hopeful it was working. However, at her next appointment (which was after Daisy’s birth) improvement had stalled and we were told surgery was back on the cards. So, 2 weeks later, she was having a hip arthrogram and two weeks after that she had a Femoral Osteotomy. This is where they cut the top of the femur and reposition the ball into the socket. A plate is put in to hold the bone in place, while it grows back and heals. This time she wasn’t placed in a cast, but couldn’t weight bare for 6 weeks which was pretty difficult getting a 2 year old to not do. However Mila was amazing, and thankfully Luke was able to get the time off work as I’m not sure how easy it would have been by myself.
Although we were devastated she was having another surgery, anything would have been easier than the spica cast! You learn to make positives out of a negative experience and we felt much more prepared this time (and the specialist gave us a 95% success rate - the first surgery was around 70%).
When Daisy was born, how were her check ups different given Mila’s history?
When there is family history of Developmental Dysplasia of the hip, siblings are automatically referred to get an ultrasound at 6 weeks of age. Mila’s specialist gave me one before I even had Daisy and we also got one from the paediatrician before we left the hospital.
Although Daisy passed the hip check in hospital and with the Maternal and Child Health Nurse (we had changed who we saw!) I had a feeling Daisy had it, although not as severely. This was mainly due to her keeping her legs straight all the time.
Her 6 week scan showed she had mild Hip Dysplasia in her left hip. Our specialist was hopeful it could resolve itself and ordered us to get another scan at 12 weeks of age.
The 12 week ultrasound showed she was still classed as mild, she had a round cup edge which is one of Mila’s main issues. The specialist decided she should go into a brace, as he had no doubt that if we left it she would come back much worse.
Daisy was put in a 'Dennis Brown Bar' and wore it for just over 3 months. She is now brace free until we return in November and both girls have an xray to see how their hips have developed. Fingers crossed both have improvements!
What advice do you have for any parents who have been told their little one has Hip Dysplasia, or if they have concerns?
Firstly listen to your instincts! If you think there might be something wrong - go and see your GP and ask for a referral to get an ultrasound or an x-ray. Don’t take no for an answer.
This is the only true way to see if your child has Developmental Dysplasia of the hip or not, do not rely on manual tests alone.
Don’t put it off. Under 6 months of age they might need some bracing, but over 6 months of age the effectiveness of bracing is greatly reduced.
If your child is diagnosed, reach out on Facebook or online to Hip Dysplasia communities. They are so supportive and answer all your questions. There is always someone that has been through what you have.
If your child does require treatment, you will get through it. It may be overwhelming and you will have a rollercoaster of emotions, but your child will no doubt surprise you with how resilient they are. Some days are really hard and you will cry a lot, and other days you will be laughing and be absolutely amazed at what your child can do in a brace. Hitting those milestones wearing a brace is a huge cause of celebration :-)
Finally, what does the future look like for the girls? How is it different/the same?
When we go back in November, we will have a much better idea with how both girls are tracking. Mila will have the plate removed from her femur around May next year. I’m hopeful that that will be her last surgery, however I am also realistic and understand that she may require a few surgeries to fix it. If her hip does what it is meant to do, hopefully she won’t have any residual effects later in life because we have done all this treatment now. However, she does have a greater chance of suffering from arthritis in her left hip in her later years.
Daisy on the other hand, will hopefully (fingers crossed!) be completely fixed and be classed as having ‘normal hips’. The chances of her having any issues with her hips later in life is much slimmer then Mila. If Daisy’s hip had been left un-diagnosed, then she would have most likely have been one of those young adults that require hip surgery in their 20’s or 30’s and then a hip replacement later on. But because of Mila, we were able to catch it much earlier.
Both girls will continue to have appointments with the specialist until they are 18 years of age to ensure their hips continue to grow as they should, particularly through their growth periods.