The dreaded Miss Elliott – B’s journey with DDH

When I tell people that B was born with both hips dislocated, there are two common reactions – most people look horrified, while others (more than you’d think) say “Oh I know someone that happened to”. Some people think it happened during labour, some think she must have been in incredible pain.

The proper name for the condition B was born with is Developmental Dysplasia of the Hip, or DDH. DDH refers to a range of abnormalities in the hip joints.  It occurs in approximately 0.1% of babies, although a double dislocation is more unusual.  It is most common in breech babies, first born girls and babies where there is a family history. B fell into two of those categories – our first born girl was undiagnosed breech and basically sat inside of me with her bum down and feet in front of her face. No wonder her hip joints didn’t grow properly!  Anyhow, I am by no means a medical expert on it all, but if you are interested in knowing more, there is good info here and here.

The first sign we had that something was wrong was during B’s paediatric check the day after she was born. The paediatrician bent her knees  and wiggled her legs about, and said she thought there was a problem with her hips and she was referring us to the hip clinic. I had heard of ” clicky hips” before but was recovering from an emergency section and didn’t really take it in or understand properly the implications of what the doctor was saying.

We went to the hip clinic at the kids’ hospital for the first time when B was 7 days old. Hubby had done some reading up and so was better prepared than me for what lay ahead. First of all came an ultrasound scan of B’s hips (during which she had a leaky nappy and was sick!!).  My recollections of this part are actually pretty sketchy – I think there was some discussion about ball and socket joints and angles, but it was all completely over my head.

We then had a long wait to see the consultant.  Miss Elliott.  They say first impressions count – well, after four and a half years I have actually come to quite like Miss Elliott, but my feelings towards her will always be coloured by that first meeting.  She came into the room, got the scan pictures up on the screen and said “So neither hip is in joint, they are both dislocated”.  No beating around the bush.  Then she looked at me and said “Don’t worry, it’s nothing you’ve done”.  Well, thanks for that, it hadn’t actually crossed my mind that it could have been my fault, but now you mention it, what about all those hours I spent bouncing on my birthing ball??  By this point I was quite emotional and B was hungry, so we were left for a wee while so I could feed her without trying to take in what was being said at the same time.

When Miss Elliott came back, she was carrying a mass of Velcro strapping – a Pavlik harness.  She explained that this would hold B’s legs in a ‘frog leg’ position to allow the joints to grow correctly.  It was to be worn under her clothes 24/7 and shouldn’t be adjusted by us at all.  Before I knew what was happening, my tiny toot was stripped off and bundled up into the harness.  I don’t actually have any pictures of her just wearing the harness because I hated it so much, but there is more information about it here.  When I went to get her dressed again, I could see straight away that her babygrow wouldn’t go on without pushing her legs out of the position the harness was holding them in, so I just had to fasten it halfway and leave the legs dangling.

Once the straps had been adjusted to Miss Elliott’s satisfaction, we sat down again and she explained we would need to come back the following week for a check up, and that the harness would remain on for at least 6 weeks.  She asked if we had any questions.  Hubby asked sensible medical questions – what was the success rate of the harness, what if it didn’t work etc.  I asked what I was meant to dress her in.  The reply was that she would just have to wear dresses.  Without tights.  In December….  Then I asked how I should hold her to feed her.  Miss Elliott said “The same way you usually hold her.”  But that would involve her legs getting pushed together as she lay across my lap.  To me, Miss Elliott had absolutely zero bedside manner – she came across as very clinical and not sympathetic at all, and I was basically told I’d just have to manage.

And that was it.  An appointment was made to come back the following week to check on progress, then we took the harnessed-up B home.  My mum came round and I cried.  I felt quite alone with nobody to turn to to ask for advice, and I wish we had known support organisations like STEPS existed.

Those first few days were a learning curve.  Nappy changes were interesting – we couldn’t hold her ankles to lift her bum up, instead it was a case of putting a hand under her bum to lift her and hoping for the best!!  None of her newborn clothes fitted her because they would push her legs out of position, so my mum designed and made several pairs of ‘trousers’ with Velcro and poppers that would fit over the harness.  We struggled to find breastfeeding positions that worked, but we muddled along (although it probably contributed to my dislike of breastfeeding).

Two days after the harness was fitted, I met up with my antenatal friends for the first time since all six babies had been born.  We lined them up to take a photo – three boys and three girls.  I remember a pang of jealousy as I saw all the others next to B – they were all in the cute newborn clothes, while she was all happed up in the harness, legs akimbo, wearing her funny little makeshift trousers.  It seemed so unfair – why had this happened to us?  Looking back I know that sounds terribly superficial, but at the time it really upset me.  You kind of expect your baby to be perfect, and when they’re not and everyone else’s around you is, it’s kind of hard to take.

By the time we returned to the hospital for our next appointment however, we’d adjusted pretty well.  B was so little that she didn’t know any different, and for us that first week pre-harness seemed almost like a distant memory – a week is a long time in new-parenthood!

The first check up after a week showed some improvement on the right hand side but not much on the left.  When I was getting B dressed after the scan, I was horrified to discover that behind B’s knees were all sweaty and gunky 😦  After that I wiped behind her knees gently every day with a baby wipe, and to this day I always wash behind her knees in the bath.

We were back at the hospital again after 2 weeks, 4 weeks and 6 weeks. Of course during these visits we saw kids much worse off than B, and came to realise that if this is all we have to deal with, we really should be extremely grateful.  The 6 week check was the day after my birthday and I got the best birthday present I could have hoped for – the news that there had been sufficient improvement for the harness to come off!!  🙂  It was replaced with a plastic splint that went on over B’s clothes and was much less restrictive.  Miss Elliott said it could come off only for nappy changes and baths for the first four weeks, and then if progress was good it would be worn only at night.  I was beyond happy!

That first night without the harness B was actually really unsettled, we think just because she had grown so used to it that the freedom to actually move about felt strange to her.  But she soon got used to it, and the second day without the harness, at seven and a bit weeks old, she had her first bath and loved it!

The plastic splint stayed on constantly for four weeks, and at night for another six weeks.  I remember the day we were told it could come off all together – I thought that would be the end of it and we would be discharged from the hip clinic, but Miss Elliott wanted to keep monitoring things as the hip joints were still shallow.  I was very disappointed.

We had regular check ups at the hip clinic for the next four years.  For the most part, the hip joints continued to grow well, although the left one always lagged behind.  Outwardly you would never know B’s history – she was slow to roll over and never crawled, but walked at pretty much the same time as her peers and now does ballet and gymnastics (and in fact is super flexible!).  But still each appointment filled me with dread – what if things weren’t progressing, what if she needed more treatment??  Sometimes we saw Miss Elliott, sometimes she sent one of her minions!!  There were nearly always medical students though – I’m not sure if it was because of the double dislocation, or because of the success of the Pavlik, but she seemed to be a case of interest!

Just after B turned 2, progress seemed to have slowed down a bit, and the socket part of the joints were still shallow.  There was talk then of putting her under general anaesthetic and injecting dye into the joints to get a clearer picture of what was going on (it was possible that the harness had actually slowed the flow of blood in the joints making growth slower – talk about damned if you do and damned if you don’t!).  That was one of the occasions we saw Miss Elliott herself, and we made a joint decision to wait six months and see if things picked up again.  Thankfully when we went back that summer, progress was good and no further procedures were needed.

When A was born last year, he was automatically referred to the hip clinic because there was now a family history.  My heart sank when at the first appointment they said his hip joints were shallow (although both in joint, unlike B’s) and they wanted to see him back when he was 3 months old.  Thankfully at the second appointment, the joints had ‘matured’ nicely and we didn’t have to take him back.

After two trips to the hip clinic with A, we were back again last month with B.  She had her x-ray done then we were put into one of the consulting rooms, wondering if Miss Elliott would grace us with her presence this time!!  In she breezed, full of smiles and chat about how grown up B had got.  She didn’t get the x-ray pics up on the screen which was unusual, but she went on to say that both B’s hips were now completely ‘normal’!  The joint development has completely caught up with where it should be for someone of four which is obviously great news.  And the best part of all?  Miss Elliott was happy that there was no need for B to be seen again, and we have been discharged from the hip clinic!!!  I was so relieved.  We went home where my mum was looking after A, and I cried again!  😉

So our four and a half year journey with DDH is at an end.  Of course we know now that we were extremely fortunate – early diagnosis of DDH and treatment with the Pavlik harness meant a relatively easy ride for us, avoiding the need for far more invasive treatment when B was older.  And for that, I will forever be grateful to the dreaded Miss Elliott.