Life in a Hip Spica

It's remarkable how well Edward has coped - despite a hot summer so far this year.  He's adapted and found ways to get around but, 5 weeks into his second cast, and he's really starting to smell - yuck!

Ed's 2nd Spica Cast

Edward returned to Queen Mary's Hospital for Children on 2nd June.  Mr Churchill performed a pelvic osteotomy and all went well.  We stayed in the hospital for two nights, sharing a ward with 3 other children at all times.  Edward was on morphine for the first night but slept reasonably soundly on paracetomol and nurofen the second night.

His new cast made it impossible for him to fit in a normal car seat, so we travelled home in an ambulance - the highlight of his hospital visit.

Saturday 29th May 2010

Just read that David Gest raised £10,000 for STEPS - thank you David. For more details please refore to http://www.steps-charity.org.uk/

Saturday 29th May 2010

Life has been plodding along relatively normally...that is, apart from Edward's current disability.  To be honest, because he has adapted so well, we've found the last 4 weeks much easier than we were expecting.  Obviously things are harder - Edward has to tell us where he wants to sit and he changes his mind very frequently but, generally, he hasn't been overly frustrated.  Actually, 'remarkable' is the best word I can find to describe him.

The nights are sometimes problematic - last night was a bad night (wake ups hourly / half hourly from 2.30 - 5.30am) but usually I only have one wake up per night which is very manageable.

My biggest worry is his next surgery this Wednesday 2nd June.  If we only had to stick with what we're used to that would be fine, but another op followed by a further 6 weeks in a spica cast is obviously daunting.

Monday 17th May 2010

We received a phone call from the GP tonight.  This is the GP who saw Edward every other month from the age of 6 months to nearly 2 years and DIDN'T send him for an x-ray.  I'm feeling cross because I was very polite - explained how Edward was coping - but I definitely didn't let her know how cross I am with her....and I really want her to know how upset I am! The problem is, despite everything, I didn't want her to feel bad - which is crazy because she certainly contributed to what Edward is now going through.

Saturday 8th May 2010

One week on and Edward is crawling in his Spica cast.  It looks very uncomfortable but he seems very pleased with his new found freedom.  He's also loving playtime on his tummy with his cars - he really is coping remarkably well.

The sleeping has deteriorated somewhat - particularly if we don't give him a dose of Mediced before bed - but generally he's still sleeping reasonably well.  It's poor Mummy and Daddy who are suffering!

Last night we watched 'Embarrassing Bodies - Kids' on Channel 4.  It featured a 10 month old boy with DDH.  Great to see the condition being discussed but they did seem to gloss over many of the practicalities.  I'm also not completely comfortable about DDH being described as 'embarrassing'!

Saturday 1st May

Just back from our first outing in the car visiting friends.  Edward was in his new car seat - bought in a hurry yesterday when we decided he wasn't secure in the booster seat we were hoping to use.  He seemed comfortable enough until he dropped off to sleep and then he started crying out - as if in discomfort.  It was so lovely to get him back into his cot when we got home.

That said he had a really lovely time visiting friends - great for him to be around the other children.

Just keeping our fingers crossed that tonight is as good as last night - not a single wake up!   He's doing so well - it really is remarkable how quickly he's adapting.

Received an application form for a Blue Badge today - now that we know we're looking at 12 weeks rather than 6 we're hoping that we'll be eligable.

Back at Home - 29th April 2010

Day 1 at home.

Yesterday was a long day with a very different outcome to that which we'd expected.  A better prognosis for Edward in the long run, but it does mean a longer time in the Spica cast.

When we arrived at Queen Mary's it was clear that the surgeon was all set to perform an open reduction to force the femur into the hip socket by scraping, re-shaping and, finally, breaking the femur.  So we were expecting a minimum of 2 nights in the hospital during which time Edward would be on strong pain medicines.

So, it was a real surprise when the surgeon left the theatre to tell us that the femur had popped back into the socket very easily - all much better than we were expecting.

This means that Edward didn't need surgery yesterday but has been set in a cast until 2nd June when an osteotomy will be performed, followed by a further 6 weeks in a Spica cast.  Bad news in the short term but much better for Edward in the longer term.

In the Hospital

Wednesday 21st April 2010

It's been a week since my last post.  In that time we met with a family who have already been through this procedure, we've acquired a Spica chair and we've visited the hospital where Edward will be treated.

I would like to take this opportunity to say a big thank you to STEPS, the charity which has provided invaluable information and put us in touch with parents who have first hand experience of DDH.  It is because of STEPS that we met with Lee and Louise, parents of Freddie (now aged 6), on Sunday.  Freddie had an open reduction aged 18 months and has loaned Edward her Spica Chair - thank you Freddie.

It was also great to have a chat with Freddie's mum and dad and benefit from their experiences - their help is very much appreciated.

On Tuesday we visited St Mary's Children's Hospital in Carshalton with Edward.  The hospital is based at St Helier's - an absolute eyesore - but, as long as Edward is well cared for, we can put up with the unpleasing aesthetics.

And so the scary, unbearable to think about, countdown begins...

14th April 2010

Finally the insurance company have agreed to cover Edward's surgery.  Now that I've received the authorisation code the documentation is signed and sent off.  2 weeks today!!!

Sunday 11th April

Our visit with paediatrician on Friday, coupled with a new post from a parent on the Steps website (http://www.steps-charity.org.uk/), has reiterated my anger at Edward's late diagnosis.  The operation is too soon for me to seriously contemplate doing anything but I am determined to take this further.

Saturday 10th April

Another meeting with the surgeon at St Anthony's hospital yesterday. What a nice man Mr Churchill is. We turned up armed with questions and he patiently answered them whilst obviously trying to reassure us that Edward is in safe hands.

It's still daunting but this has to be done and now we just want this wait to be over.

Today Edward managed to climb up the ladder to the top of the slide and come down without any assistance.  It was another unusually warm, sunny day.  It seems so cruel that, just when he's starting to get a bit more mobile, we're going to be restricting his movement.

Thursday 8th April

Edward and Katie came home from Grandma and Grandad's house today. It was a beautiful, sunny, warm today - felt like the first real spring day we've had all year. It was so great to see them both. I kept the patio doors open and they were in and out of the garden laughing and generally having heaps of fun.

Edward is practically running now - although still with a very pronounced limp. That said it's amazing what he can do when you think that his right hip is dislocated.

Also had some great news from a family I contacted via the Steps website (http://www.steps-charity.org.uk/).
They have a Spica Chair that may be suitable for Edward.  My husband took the call, so just need to call back and make an arrangement to go and see it.  If suitable, the chair will make it possible for Edward to sit up at a table to eat meals and do a bit of drawing, etc.  Otherwise it will be 6 weeks on a bean bag or cushions I think.

Back at St Anthony's Hospital tomorrow to meet with the surgeon.

Wednesday 7th April

Edward and his sister, Katie, have been at Grandma and Grandad's house today. A day in the office for me so a good opportunity to fax (amazed people still use these things!) invoices from the surgeon to the insurance company and print off my list of questions. We meet with the surgeon this Friday, so I've prepared a long list of questions, with spaces in between to allow room for answers.

The insurance company still haven't confirmed that they'll cover the cost of Edward's surgery in 3 weeks times, but I'm feeling (unusually) positive that this won't be a problem. They're simply waiting on a letter from the surgeon and, given that he hasn't sent it yet, it's not surprising that they haven't given us the go-ahead.

Three weeks today. I can't believe it's approaching that quickly. Poor Edward.

Tuesday 6th April

Just watched Great Ormond Street on BBC2 and have tried to put Edward's condition into perspective. It isn't life threatening (apart from subjecting him to a general anaesthetic) and worst case scenario is that he'll never walk perfectly and may suffer from pain in his hips as he gets older.

I also called the GP's surgery and the medical insurance company today - neither have received a letter from the consultant, so I'm still waiting to confirm if we'll be covered privately. Plodding along regardless - would rather be in debt than leave it much longer for Edward to have this procedure.

Our Story

Today is Monday 5th April - 10 days since our son was diagnosed with DDH (Developmental Dysplasia of the Hip). Edward is 2 years 2 months and this is a late diagnosis - especially so given the amount of specialists he has seen.

Edward was late crawling, late cruising and very late walking. When he started to crawl he would favour one leg and drag the other and when he started to cruise around furniture one leg looked slightly longer than the other. Throughout this period our GP was monitoring his progress and did not feel that there was any reason to be concerned.

However, in November 2009, when Edward was 21 months the GP did decide it was time to refer him to a Paediatrician. The GP believed his feet were slightly out-turned and, given that he had one crease at the top of his right leg, which wasn't visible on his left leg (often an indicator of DDH), she felt it was time for a specialist to have a look at him.

In December Edward saw the Paediatrician. I voiced my concerns about his left leg looking longer than his right, the crease at the back of right leg as well as his late, and very unsteady, walking. She looked at his legs and didn't feel that there was any discrepancy (although she didn't measure them) and she moved his legs and felt confident that both hips were fine. She did think that he was leaning over on the sides of his feet, so referred Edward for a Physio Assessment.

Over Christmas Edward's walking was improving but, as he got more confident, it became very noticeable that he had a limp. So much so, that on three separate occasions I was asked if he'd hurt his leg or why he was limping. At this point I still hadn't received an appointment for the Physio Assessment, so I made an appointment to see a different GP at our surgery. He took my concerns very seriously but was a little uncomfortable that I was seeing him rather than the doctor I'd been seeing regularly for over a year. For the first time, Edward's legs were measured and there was a slight discrepancy. Within 24 hours the Physio department had called and we had an appointment for the following week.

The appointment with the Physio lasted about 45-minutes and she was very thorough. She confirmed that Edward's left leg was 1.5 cm longer than the right leg and it was also bigger in general. She also diagnosed hyper-mobility. What she ruled out completely was a problem with either of Edward's hips. I explained that I would really like him to be x-rayed, just to ensure that his hips were fine. At this point she placed both of my index fingers on his hip joints and explained that his hips were in perfect alignment and an x-ray wouldn't tell me any different. (Now that I have an x-ray proving otherwise I am fighting the urge to confront her with it).

Having seen the Physio I started to believe that Edward was fine and I was being paranoid. After all I had a diagnosis. He did have a longer left leg - but some children do - and he was hypermobile which accounted for the late walking.

Our follow up appointment with the Paediatrician was in mid-March and we just carried on as normal until that time. That said, my old worries were starting to resurface. So, on our next visit to the Paediatrician I decided to take my mum along for a bit of moral support. I wanted to insist on an x-ray. Edward was not only limping but the limp seemed to orginate from the hip and, as my mum said, he walked like an older person in need of hip replacement surgery.

On 18th March we walked into the Paediatrician's office to be confronted with a completely different doctor to the one I had seen in December. I asked if she had seen the Physio's report and she said 'no', so I was immediately feeling like this appointment was going to be a waste of time. However, from that moment on, she was absolutely brilliant. She listened and she studied Edward closely as he moved around the room.

It was a long appointment but at the end of it she promised that she would phone me when she'd had an opportunity to talk to an Orthopaedic Consultant at the hospital....and, you know what, she did! Finally someone had listened! Finally, we were making progress.

She confirmed that a Paediatric Orthopaedic Surgeon would like to see Edward and would also like to x-ray him (yes, yes yes - finally). The only downside was that it would take another month or so before we saw him. However, as I put the phone down I recalled that Edward was covered on my medical insurance at work. So, a few phone calls later and we had an appointment with the consultant for that Friday.

Since then things have been moving really quickly. The consultant confirmed that the whole of the left side of Edward's body is larger (excluding his face) but that this is coincidental and not linked to DDH in his right leg. The x-ray clearly showed that Edward's right hip is dislocated and probably has been since birth.

For the time being at least I am trying to put my anger at this late diagnosis to one side and concentrate on what needs to be done. Edward will have surgery on 28th April and then spend 6 weeks (pretty much immobile) in a cast which will start at his chest and end at his ankle (right leg) and thigh (left leg). His cast will be set so he is neither sitting or lying flat.

Crease on back of right leg, with uneven knee creases

Poor Edward - can you imagine - and all this in the knowledge that it could possibly have been avoided had it been picked up at birth