Hello all! I have been meaning to update you for quite some time now, but have just been run ragged really. At the moment we are all recovering from a nasty virus that seems to be a sort of flu, but also involve a bit of a stomach flu (which I was up with throughout last night) and almost a week of broken sleep for all of us. We have managed to share the load with getting up to the kids and giving each other a rest but with that and a lot of travel and social commitments, it’s fair to say we’re all pretty exhausted. I can’t tell you how many times J and I have looked at one another and said “No rest for the wicked!”.
Now apologies in advance, this is a looooong post and has taken me a couple of days to finish so it might be a bit all over the place. But it was something I needed to write about.
So, something else that has been keeping us busy is a whole host of appointments for Miss Ruby. As you may have picked up in my previous post, I’ve wondered for some time what exactly is going on with little Rubes. She has been slowly meeting all of her milestones, but slow is the operative word. She is happy and content but extremely relaxed. And I was starting to really wonder why she wouldn’t weight bear on her legs, when I knew by six months both Heike and Walter loved to stand supported.
I worked myself up about it quite a bit and managed to convince myself she had hypotonia, or low muscle tone. I knew that if she did have it, it was probably very mild and could be corrected with some physio, as she had started rolling over and was actually quite average/advanced with her fine motor skills (e.g. using her hands) and cognitive skills (responding to her name, chatting etc.).
I enrolled Ruby in PeKIP classes, which are very similar to Baby Gym or Gymbaroo but more intensive. The instructor, Anne, is quite well known in Hong Kong for her expertise with young babies, so I was looking forward to getting her perspective.
During our first class, it was obvious to me that Ruby was slightly behind the other babies in terms of gross motor skills (all the same age) but not drastically so. Yes, she would not be crawling any time soon. Yes, her head control wasn’t great. But she could do a lot of what the other babies could do, and perhaps even more when it came to babbling.
The one thing that really stood out to me was that she could not weight bear on her legs, at all. The other babies could be pulled from laying to standing just by holding onto their hands – there was no way Ruby was anywhere near this. I asked if I could speak to the instructor after class, and listed my concerns.
Anne agreed that Ruby could be low tone, but could also be totally normal. What she was worried about was her legs. She pointed out that her torso wasn’t straight, and her left leg was a full 1.5cm shorter than her right. I was crying by this point, of course. Anne recommended we take Ruby as soon as possible to a paediatric physio, and recommended Liesbeth Krebbers.
We managed to get an appointment with Liesbeth the following day, and she is basically my new favourite person. She is just so experienced, with three kids of her own and 30 years as a paediatric physio, and extremely lovely and responsive to parents’ concerns. She has been emailing me weekly since I first met her!
Liesbeth did a whole host of “test” exercises with Ruby and essentially rolled her eyes at us and told us she is NOT low tone, and explained why, but is simply on the low end of the development scale. I’m coming to terms with this – there is a bell curve, and Ruby is at the far end. I still worry constantly! But she said this physical “slowness” can be very common with third children (why move when there is so much going on around them?!). She also pointed out that Ruby is extremely easygoing and hence will really need to be pushed to achieve her physical milestones.
Again, what Liesbeth was worried about was Ruby’s legs. “What is going on with this hip?!” she asked, looking at her left leg. She could not believe that a breech baby girl had not been scheduled for a hip ultrasound after birth. Apparently it is something they are not expert at dealing with in Hong Kong, as hip dysplasia is quite uncommon in Asian babies. She recommended we see our paediatrician immediately to schedule a hip ultrasound.
We saw a new paed as I was disappointed my previous one had not picked up any hip issues prior to this. This is something that could have been full rectified by now, had we picked it up at birth. But I’m not going to dwell on it! Anyway, the new paed informed us that being over 6 months Ruby would need an x-ray, and we were scheduled for one just an hour later.
That evening, we got the call from the paediatrician. “Yes, there is a problem in the left hip. You will need to see an orthopaedic surgeon.”
Many people would be shocked and saddened by this news but honestly, I just felt relief. It explained so much for me. I had known for so long that something was going on, but couldn’t put my finger on it. Still, I was anxious about what kind of treatment she would need, given she had passed that six month mark.
We went to see the Orthopaedic Surgeon our paed. recommended on the following Saturday, which was essentially useless except for the fact that he wrote us the referral that enabled us to get in to the public system. He basically confirmed she had dysplasia of the left hip, but didn’t really say how he would treat it – he thought a harness should work, but that we should go through the public hospital as we would need weekly fittings and bi-weekly ultrasounds. This made sense but the visit was ultimately weird.
So marked the start of a whole other journey for me. I wasn’t sure I wanted to use the public hospital as I wondered how often they really dealt with this issue, as opposed to in my home country of Australia where hip dysplasia is quite common. I reached out to both Anne and Liesbeth, whose opinions I trusted, and they thought the public system would be okay but asked if travelling home for treatment would be an option. Anne put me in touch with Andrea, a Mum she knew who had been through something similar.
Andrea also took her daughter to PeKIP class and was constantly worried about her development. Months passed and she eventually walked, but with a limp. Anne referred her to an osteopath, who was sure she had hip dysplasia. Andrea took her daughter to her paediatrician (who, interestingly, is the same paediatrician we used for our second opinion!) who said no, she’s fine, it will correct itself. More time passed and Andrea became more and more concerned – she eventually returned to her paediatrician and demanded an X-ray for peace of mind. Lo and behold, her daughter had not only dysplasia of the hip, but an active dislocation. Poor little thing! This paed. referred her to the same Ortho Surgeon that he referred us to, who was just as hopeless as we experienced, which led Andrea to seek out treatment in her home country of Australia.
Andrea used Dr Michael Bellemore from Westmead Hospital for her daughter’s surgery, which at 18 months old was quite invasive, and she couldn’t recommend him highly enough. She put me in touch with him via email, and he was kind enough to look at Ruby’s X-rays and radiology reports and provide me with his recommended course of treatment – a hip abduction brace.
Meanwhile I was still trying to get an appointment at the public hospital, which was proving difficult. The lady I was getting on the phone spoke minimal English, and I needed to fax in all Ruby’s relevant documents and wait for their phone call. J got his assistant on the case, and after a lot of calling and hassling in Cantonese she managed to get an appointment four weeks later. This was not going to work for me – I was way too anxious about getting it sorted – so J asked her to just keep calling and hassling. The beauty of Hong Kong is that this approach actually works – we got an appointment the following Tuesday.
Now that I had Dr Bellemore’s opinion, I felt I could bounce that off of whatever opinion the public doctor had and see how I felt. So I showed up at the hospital feeling nervous. The hospital is a tiny, dilapidated building in Sandy Bay, attached in some way to the Hong Kong University. Driving in there is absolutely no indication of where you should go or park, so I sort of parked on the side of a driveway and hoped for the best. I made my way in and approached the counter to register – you need to bring the passport and birth certificate every time you visit, and can pay the very affordable $100HK fee by Octopus! So Hong Kong. The lady in the shroff office doesn’t speak much English, and it was only after a few trips back and forth between different desks that I got all the various slips of paper I apparently needed and was directed to the waiting room.
The room was full of children in casts, which I expect is the main function of the orthopaedic clinic. There were a few smiling babies around, and one other “gweilo” girl in a school uniform with a broken arm. I felt distinctly out of place and prepared for a ridiculous wait, but after about five minutes I heard Ruby’s name – “Elizabeth Wilde to Room 3”. Hey, they almost got it right!
Entering the room I immediately felt the doctor’s vibrant energy. She was probably late 30s, Cantonese but with a perfect American accent, and introduced herself to Ruby and I as Dr Evelyn. She had so much energy and right away jumped into questions – she looked at the X-rays, at Ruby’s legs (for quite some time), but also at her head (which is still a little mishapen), her body, chatting to her, asking me about her siblings. I immediately got the vibe that she was not only onto it, but that she cared. Pretty much then and there I knew we would continue seeing her.
Dr Evelyn came to the conclusion that yes, Ruby has hip dysplasia, and she would like to undergo a process whereby she would put her under a general anaesthetic and insert a dye into the hip to get a better idea of exactly what is going on (the position of the hip in relation to the socket, whether something is blocking the joint, etc) and then decide whether she would need a small surgery. Either way Ruby would end up in a spica cast, which is essentially a half body cast that keeps the legs separated and, by virtue of time, repositions the hip.
This scared me a little and given Dr Bellemore’s recommendation I questioned why she could not first try a brace or a harness. Dr Evelyn replied that she absolutely could, but given what we know now (i.e. not much) and her age, there is no guarantee it would work. She suggested a plan of attack: Ruby would be fitted for a Pavlik harness with an appointment for an ultrasound after two weeks. If there was no improvement, or the ultrasound suggested there was an indication for surgery, we would book Ruby in for the procedure and Spica cast a week later.
So, that’s where we’re at now. Ruby was fitted for the Pavlik harness last week. Oh the stories I could tell about being a six foot tall white woman walking into an Occupational Therapy ward which is for some reason full of 80 year old Cantonese men on exercise bikes. Certainly I will not get to the end of my life and feel I haven’t lived! It is all a learning experience, it is all growth, but it’s been a tough couple of weeks. Next week is our ultrasound and then the following week we will make the call on the Spica cast.
I’m slowly becoming okay with it. One thing that’s been hard for me to admit as a Mum, but that J pointed out, is that Ruby just looks more comfortable in the harness! She always looked a little off kilter before, not quite straight through the torso and her left leg at an awkward angle. But she really seems happy and cosy in the harness, and is so alert and smiley, it seems like the right thing. Sure, it is a little annoying to deal with and not fun having to answer questions from every single person we see (No, she didn’t hurt her leg…) but it is helping her and that’s the best thing.
I’m still in a land of limbo – I don’t know where Ruby will be at in two weeks, I don’t know how much physio she will need to catch up when all this is over, I don’t know how long it will take her to walk or crawl or even sit up. But I am feeling okay about that. I know there is a lesson for me in all of this, and I know that Ruby is happy, and that’s all that matters.
So, sorry for the essay! It was helpful for me to get all this down, and I have a feeling I will be posting a lot more over the coming months. Thank you, for listening.
P.S. A lot of pregnant Mums with breech babies seem to get directed to my blog – if you are one, please DEMAND your baby get a hip ultrasound at birth. You might thank me for it! xx