My open to letter to my MP #healthyhipweek

Written by Emma. Posted in DDH, Erin and DDH, hypermobility, Uncategorized

This week, March 11th is healthy hip week, a cause close to my heart. Erin’s story is well known to many but I still have so many unanswered questions. Those questions I have decided to put to my local MP. I simply can’t sit on the sidelines and watch others go through what my girl has gone through. DDH has changed my life – I barely knew of it existence before Erin and that has to change. All parents need to know the signs.  I want to make a difference by raising awareness.  Importantly, it is not just babies with a family history or a breech birth at risk.  It is not just first borns, even if it is more prevalent in this group.  It can affect any of your babies.

To

I am writing to you to gain your support and highlight that too many young children are being massively let down by the Newborn Screening programme adopted in the UK.  Developmental Dysplasia of the Hip is not being effectively screened and the methods have not changed in the past 40 years.  If DDH is identified early (within first 8 weeks) treatment is often non invasive and the wearing of a pavlik harness will correct 95% of unstable hips. 

After this time treatment becomes more complex.  Invasive, often not sucessful. My concern is that babies are discharged from hospital to GP care and GP’s are not experienced in hip checking, likewise health visitors fail to spot the symptoms.  My daughter went undiagnosed until 22 months of age despite having the classical symptoms including extra creases in her legs, unsymmetrical creases, a leg length difference and refusal to weight bear.  These symptoms were pointed out at her nine month check but still the health visitor failed to action an Xray or refer to a specialist.  Many more rountine visits failed to notice that my daughter had a dislocated hip.

My daughter Erin was let down time and time again until she was finally diagnosed at 22months.  By this point Erin limped and fell over every few steps.  Most amazingly the pediatrician we were referred to was instantly aware of what the problem was and identified a hip problem from watching her walk.  It was so obvious to him.  It angers me that he was able to quickly identify what GP’s and health visitors had failed to spot in their many appointments and screening programmes.  He saw it, so why didn’t others.  He literally watched her walk into his room and told me what I already knew.  That Erin was presenting with a serious hip problem.  He said he wouldn’t even examine her as she was going to get fed up with all the exams that were going to take place.  He knew, why didnt others spot this? A simple xray confirmed that Erin’s right hip was dislocated.  Due to her late diagnosis she has needed extensive treatment including a closed reduction, an open reduction and a salter’s osteotomy. Erin was in a spica cast for 24 weeks last year.  A cast that went from above belly button to ankle, a cast that rendered her immobile.  A cast that restricted everything.  I had to take a year off work.  This hampered her overall  development in all areas including speech and gross motor skills.    Erin still presents with a different gait to her peers, she may have been left with a permanent gait problem, she may still need further treatment.  We also do not know what long term complications lie ahead for Erin for the rest of her life. 

I would like:

1. All babies to be examined by experienced health care professionals.  I question how many community GP’s and health visitors have actually felt and diagnosed a dislocated or sublaxed hip in a newborn or baby.

2. All parents to be given literature on DDH at the six week check with the warning signs. This needs an urgent review.

3. All health visitors and GP’s be re -educated on hip awareness. It is not just breech babies at risk.

4. All babies to be scanned after birth like in other parts of Europe where late diagnosis is virtually unheard of. 

All babies need to be treated as this paper highlights 60% of DDH cases are of children with no risk factors.

In over fourty years this country has not improved its detection or treatment.

I hope to gain your support and urge you raise these points with the Minister for Health.

Kindest Regards Emma

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