This is my friend Megan’s account of her daughter’s journey with DDH. I hope you will find it encouraging to read a Pavlik Harness success story!
Until I became a parent I had always been a firm believer that if you are determined, and you work hard enough, you can achieve anything. Then I had a baby. The loss of control started while I was pregnant when Hannah remained in the breech position and was so firmly wedged into my rib cage and pelvis it was deemed pointless to try and turn her (via the ECV procedure described by Jen in her earlier posts). In the UK there is no option of attempting a breech natural birth (although in New Zealand they seem to think that is an excellent option :-0), so months of hypnobirth training in preparation for what I imagined being a tranquil, earth mother labour with dreamy music and hallmark card endings was shelved for an elective Caesarian at 39 weeks. It ended up a fairly harrowing day of waiting while emergency after emergency shunted me to the end of the day WITH NO FOOD (the worst part!). It was a less than ideal start from my perfectionist viewpoint.
Being a first born, female, breech baby with genetic predisposition ticked all the boxes for potential hip problems. Luckily in the UK, and in New Zealand where we now live, there are screening programs to check all newborn babies hips. If you have a breech baby you are additionally sent for an ultrasound screening of the hips at six weeks. Hannah’s hips were checked at birth and no problems were found. I didn’t think much more about it. The six week check-up came and I had been totally focused on trying to establish breastfeeding, which was still not going particularly well. My ‘work hard, achieve anything’ ethic led me to doggedly persevere and it was taking all the energy I had to cope with the discomfort and the worry that a lack of milk was the reason our darling Hannah was a ‘non-sleeper’.
Jared didn’t come with me to The Appointment because I didn’t think much was going to happen. As anyone with a young baby will know, trips out with a baby are a mission. Timing is everything – naps, feeding and nappy changes have to be planned with military precision. Bags are prepared well in advance. Of course I know all that now, but back in those days it was just chaos, and stress levels were high whenever I had to get to any appointment. Both this visit, and what became many subsequent visits involved long periods of waiting in the waiting room. I was trying to breastfeed using nipple shields that would fall off during the feeds. Milk would spray everywhere and Hannah would scream. I was a very long way from the happy hippy mummy I had envisioned in my head!
With that stage set, we finally went into our appointment and the consultant, who was remarkably lacking in empathy and compassion for a paediatric doctor, soon let me know there was a problem. She made a comment along the lines of “oooh that’s not good” when looking at Hannah’s hip socket, whipped out her ruler and spent an age drawing angles on the print out of her ultrasound. We had to return a couple of weeks later and have a Pavlik Harness fitted. I battled to take it all in, and the reality only really hit me when I got home and started googling ‘Pavlik Harness’. The nightmare that is Google also provided me with a lot of information as to what could happen if the Pavlik Harness treatment did not work. I was officially freaking out.
SOCKS? WHAT SOCKS?
The UK is fortunate to have a wonderful, if controversial, public health system that allows potentially debilitating problems like hip dysplasia be diagnosed and treated for free, but it also means resources are stretched and one very quickly becomes a cog in a wheel. Beside Google, I had very little preparation for what was to come. Arriving the following week to have the Pavlik fitted (slightly better prepared for the trip, but not much!) I was asked where Hannah’s socks were. Socks? Apparently one was supposed to bring long socks that reached up to her mid-thigh to protect her very delicate skin from chafing, especially behind the knee’s where sweat can cause a nasty rash. So we had no socks, and I was already feeling like I had failed to look after my baby. **Disclaimer – I can’t totally confirm I did not receive sock advice during our first visit. I was in a daze – they could have told me anything.
The harness was to remain on 24 hours a day and we were to bring Hannah in once a week to ‘bath’ and have the harness adjusted. That meant that besides the socks, the harness was on her naked skin, and clothes worn on top of it. Nappies had to be woven through the harness straps. Not everyone has this treatment method. Often one is allowed to remove the harness daily to give your baby a quick wash, which means the harness can be worn over clothes. Our consultant was fairly hard core though, saying that if we wanted the best for our baby, we should not remove it. I know she meant well, and was doing her job, but I confess I did not have warm fuzzy feelings for her at this stage. I needed someone to blame for how dreadful I was feeling, and she fit the bill nicely. If I got tearful, which happened pretty much every week in the early days when Hannah would scream through the entire appointment, she would basically tell me to man up, as we were doing what needed to be done.
A SOLID LITTLE BUDDHA
Picking Hannah up for the first time in her harness almost broke my heart. My floppy cuddly baby was a solid little Buddha baby! I was sorely lacking in perspective, but I felt like my baby was broken. I could barely look at her without tears on that first day, and yet I needed to cuddle her close constantly to assuage the guilt I felt for putting her through this treatment. It must be said that she seemed absolutely fine. Smiling, happy enough, and overall not too bothered at all. The first few nights we were told to give her some paracetamol as she would be suffering from some stiffness from her legs being held in the lateral position. Her sleep was still pretty dreadful, but not necessarily worse than before. I got the hang of breastfeeding her pretty quickly with the help of some gymnastics and pillows to find a good position. Nappy changes quickly became a doddle, and perhaps easier than before since her legs were trapped in position instead of waving about with poo going everywhere. The worst thing we had to deal with was the rubbing of the harness on her skin. We wrapped surgical tape around the hard velcro bits, and I tried wrapping fabric around some of it, but she still suffered from rub marks on her delicate skin throughout the treatment.
Not being able to bath her led to some nasty rashes and peeling skin behind her knees in particular. We did do the odd hair wash at home (see picture) and did a ‘top ‘n tail’ every night to keep things fresh and stick to a night time routine I was trying to implement to improve our bedtimes, which were long and arduous. Finding clothes that fit was also a problem, as it was mid-winter in the UK. All the onesies I had bought or been given were useless as we couldn’t take the harness off to change them, so she had a couple of pairs of baggy trousers and tops as a standard uniform during the Pavlik Period. I also bought an awesome snow suit that had a sleeping bag like bottom for venturing out in. We also had to buy a proper cot, as she had previous been in a hammock which didn’t work at all with her legs in the froggie position. Luckily the car seat was not a problem – we used a Maxi Cosi Cabriolet and the Pavlik fit fine within it. A life saver in terms of containing Hannah so I had my hands free on the odd occasion was the Baby Bjorn seat.
The following week I took Hannah in for her first ‘bath’ at the hospital. Truly I was expecting to be able to bath her – but it turned out the harness came off, I wiped her down with a cloth and the harness would go back on. I had been so excited about this first bath I had taken a rubber ducky with me for her to play with. I felt a bit foolish, and once again VERY sorry for myself and my baby. When I look back at it, I have to laugh though. What would an 8-week-old do with a rubber ducky? This time I had brought socks, and we had to apply a drying cream behind her knees as the skin was already inflamed and peeling off in places. This became our routine for the next six weeks that we were initially told Hannah was going to be in the harness. Six weeks became eight weeks and then after nine weeks and we were given the joyous news that the harness could come off as her hip socket angles were within normal range.
THE END IN SIGHT
At the beginning of this journey I felt such sorrow – that my baby had physical problems, along with guilt -I blamed myself for her being breech, a bit of anger – that we were going through this when everyone else in my post-natal group had had perfect pain-relief free natural births and babies with no issues. Looking back though, with the perspective that time gives, I can see that this experience was an important part of the crash course that came with becoming a parent after a decade of being career-driven, footloose and fancy free. Nothing had prepared me for how helpless and vulnerable an ailing child can make you feel, and the total loss of control you experience when a little person comes into your life. I feel quite embarrassed now at how much I battled with our hip dysplasia problems in my early months of being a mum, despite being aware that many people had far bigger challenges to deal with. Hip dysplasia is a relatively common, potentially debilitating, but extremely treatable problem, and the treatment that babies receive these days prevent a number of problems in later life. The most important lesson I learnt was that stuff happens, whether you deserve it or not, no matter how hard you work to prevent it, but the legacy it leaves is a direct result of how you view the experience.
I am happy to say that Hannah had six monthly check ups until she was two years old, and then was released from the hip program. She started crawling at around seven months, and although she was a late walker, finally walking at around 15 months, it was late but not that late. These days, at three and a half, she seems to think walking is a waste of time, and is usually found running. She is an absolute delight and I am so proud of her. My darling girl has taught me a huge amount in her three and a half years. I can’t wait to see where the next few take us.