Today’s post is another example where a delay in treatment might be the reason for requiring more invasive surgery. The statistics tell us that 95% of cases treated with a pavlik harness from birth will mean that surgery is avoided and hips are corrected. Without this early treatment outcomes are not as good. I believe that our children deserve the chance to be in that 95%. This story is Lisa’s experience from here in the UK.
Labour induced started 2nd April 2O13 a pessary was used and finally after a second pessary 3rd stage labour started and I was 3.5cm and I could feel it coming on strong. I asked the midwives what happens next and her reply
‘we have no beds for you at the moment so your labour will have to wait, are your not quite 4cm yet so your not in labour yet’
So for the next 4 hours as I knew labour was progressing but they wouldn’t examine me as they knew my labour wouldn’t of progressed yet and they still have no beds. They gave me gas and air and I was on the triage ward in agony nearly ready to push. They asked me to keep the noise down and turned off the lights and sent home my partner, I ran out of gas and air and they said I could have no more as they wasn’t meant to give it out on that ward. My only option was pethadine. I reluctantly agreed as I was in agony and they were still saying I wasn’t yet in labour. I called her back and demanded she check me, she agreed saying she will take out my pessary and start again tommorrow with my labour as they still have no bed.
I accepted they did it as I knew I was in labour! Finally the examination confirmed I was 8cm finally I was taken to a bed and my partner called back, my waters had broken according to the student midwives. I then begin to push as I wanted to and they let my body do the work. 3 hours later the baby was distressed and I was being told I wasn’t doing it right. The senior nurse examined me and my waters hadn’t broke and I was only 9 cm. They finally broke them and I was feeling exhausted, however I finally delivered my beautiful girl.
Yet it wasn’t over, with the cord tangled round her head twice, covered in meconium and not breathing for herself she was taken to Neo natal unit. Later they took me to see my little girl after 3O minutes of not breathing for herself. My little miracle pulled through and my ordeal was over and 4 days later after more tests and passing all the baby checks we were discharged.
The six week check up finally came round and my doctor noticed a clunk on both hips and requested I have an emergency scan..
A long worrying 6 weeks later (as the operator read the referral wrong and thought she meant emergency scan 6 weeks time not 6 weeks of age) we finally had the scan and a voicemail was received 1 hour later saying please come into hospital and see a surgeon.
I was petrified! Rushing back to hospital he then confirmed my little girl Hope Olivia has grade III bilateral dislocation of hips
He had a pelvic harness with him to fit on Hope to use 24 hours a day for 2 weeks, I was gutted, how could I bath my little girl and dress and change her nappy now. What about her beautiful clothes I had for her. Her surgeon then stated the harness works better from birth and that it may not work on under 4 months old but it’s worth a try before thinking about surgery.
Surgery what? Why has this happened ? Why my little girl? What does this mean? Will she walk? All these questions I’m thinking while hoping the harness works for her was a very scary time.
Then I researched ddh and wondered whether this could of all been prevented ? I am very negative as the harness is 95% effective from birth and as my girl had grown I knew we had slim chance. After the 2nd scan it was confirmed it’s not working and we need to come back when she’s 6 months old for surgery.
Gutted!
Finally they fit my little girl in for a date at 8 months of age . All the questions and worries start.
What operation are you doing ?
Surgeon: we won’t know until we get into theatre
Feeling worried and scared of what she will be having she finally done. A long 2 hours later she came out in a Hip spica looking sore and confused but happy to see familiar faces she soon smiled again.
After meeting with a new surgeon (we’ve never even met before) he confirmed she had open reduction on left hip and couldn’t operate on her right hip as it was too unstable and would need a bigger operation when she’s over 12 months.
Gutted again we are left feeling that nothing ever goes right for our little girl and we have now to look after her with this huge pot all around her bod,y with her unable to sit up and limited movement and then go through this all again!
At first I kept her inside a lot to be more comfortable as her car seat & push chairs didn’t fit her correctly and I was embarrassed of people looking at her and worried they were judging me and my little girl and not using no consideration!! This soon passed as I got used to the spica and how to handle it. I talked more about it and explained that’s she has poorly hips and not that I’d thrown her down the stairs!
She re-learnt to crawl again and soon adapted very quickly as she healed.
It started to be normal to us. Even childcare adapted and still would help us look after her. So I could go back to work, as I was self employed.
Then the pot change came round and we were under the illusion the surgeon was going operate on her other hip once they rescanned her. And when we turned up it was the original surgeon and he said no he’s not going to even try and just operate when she’s older.
Coming out of theatre that day she was in lot of pain and she had only had just had a spica change. I thought the cast seemed tight and the nurses agreed with me but still let her go being sore and tight and just cut it down a bit for her comfort.
After going home and seeing her be sick after every meal, crying constantly and distressed I took her back to the ward and the surgeons junior agreed it was too tight and said the only option is to take her back to theatre again and to redo the spica yet again!
Having to go through all that again because they didn’t do it right made it my last straw. I decided that I no longer want to be taking my girl to this hospital, all the mistakes are getting too much and I couldn’t trust them any longer! We had a meeting with them and they agreed they have let Hope down as a trust and they apologised!
Apology!! That won’t make my girl better! Why didn’t they act quicker?
Why were they doing things wrong and making so make mistakes I was so angry!
A fresh start has happened and we are now over the first half and currently at a children’s hospital awaiting surgery on her right hip. Hope will be looking at having an open reduction going in from her bikini line, femoral osteotomy and possible pelvis osteotomy
Yet again I am petrified! How can my little girl have plates and pins in her leg?
She’s so young! She should be reaching her milestones like all the other kids
So now waiting for the 20th June to come and go and it’s going be a hard time but we will get through it and she will adapt because she’s a fighter which she has proved time and time again.
I just hope this is the end of her journey with this horrible disability and hope she is able to walk with out pain
I hope she can avoid hip replacements and and live a pain free life.
Wishful thinking there is no more operations!!
As this horrible disability is unknown and they can’t give her the all clear until she’s fully grown
However she is still my beautiful girl & such a brave inspiration to loads of people ..
She still keeps smiling!!
One Response
She is gorgeous! All this worry must have taken a real toll on you Lisa and it must be difficult to stay strong. Glad you’ve moved for better treatment and wishing you lots of luck for the 20th x