Our daughter Elise was born in August 2006. She was perfectly healthy weighing 5lb 7oz.

Standard checks were done, including her hips. Nothing was detected and we were allowed to go home. Again at her six week check with our GP, her hips were checked. Still there was no sign of DDH.

About 8 weeks old, her Dad and I noticed a ‘clicking’ each time she moved her legs. At first it seemed to be from her right leg but her Dad also felt it clicking in her left.

Sadly, it took some time for anything to be done about our concerns. As I was still in regular contact with our health visitor I asked her advice. She told me ‘babies click’ which as a first time Mum I believed. A couple of weeks passed and we were both still worried so I spoke to a different health visitor at the baby clinic. Once again I was told she was fine. She even went on to tell me not to make an appointment to see our doctor. She said just to mention it at our next check up.

So at Elise’s immunization appointment I asked the nurse when we would next see our doctor routinely.She informed me that we wouldn’t, unless there was something wrong. So,  I made an appointment there and then.

Elise was seen by our GP and he confirmed the sounds of clicking in both hips. We were referred to Wigan hospital for an x-ray. I must admit, I was expecting the doctors to tell us everything was fine. And as I had asked around about ‘clicky’ hips, I thought they were going to tell me to put two nappies on her.

I was very shocked to hear that both her hips were dislocated!

From Wigan, we were referred to Alder Hey Children’s hospital in Liverpool. We had our firstappointment on 7^th February 2007. Elise would need a closed reduction and a cast for six months, maybe longer.

I had taken a list of questions to ask the consultant. Our next appointment would be the day of admission.

We were anxious to begin treatment but upset about what it meant for Elise. There seemed nothing at all wrong with our little girl, and to suddenly give her this difficult thing to deal with felt cruel.

At the end of the day, we knew it was better to be treated than to be left so obviously we were doing the right thing for our baby.

Elise was admitted on 3^rd April and she had her closed reduction on 4^th April 2007. She was 7 months old and could just sit up by herself.

After her operation, she suffered from muscle spasms for a few hours. We were allowed home as soon as she didn’t need the strong medication. We came home on 6^th April (Good Friday).

It was difficult to get used to holding her and at first we sat on her a cushion on our knees. Elise adapted well. She was still the happy little girl we all knew and loved. The cast was on for ten weeks.

It was supposed to be twelve but she had completely grown out of it. It was half way up her calves so the consultant agreed to change it early.

Elise then had another Spica for 8 weeks. She was almost ten months old. She learned how to crawl n this cast. It was an army crawl. Still she couldn’t sit up on her own because the cast was up to herwaist, but she had a bit of independence now she could crawl.

Her next cast was Broomsticks. That was from her thigh to her ankle with a bar between the knees.

This meant she could learn to stand. She had this cast on for a total of 14 weeks. We were looking forward to giving her a bath. She really wanted to be walking and she certainly tried. She would push her toys along shuffling her feet one at a time.

Her cast was finally removed on 16^th November 2007. Seven and half months after she had her operation.

She was like Bambi when we got home.

But day by day she got stronger and now, over two months on, there’s no stopping her. Her first check up will be in May. Elise coped so well with her legs in plaster for so long. I know I wouldn’t be able to do what she has!

She makes her Mummy and Daddy very proud!!! Xxxx

Jay Littler March 2008

This content has been removed.

Please click here to return to the homepage.

Lydia's story

22 June 2006

Lydia is now nine months old and in a hip spica after being diagnosed with DDH, eventually. I will tell you Lydia's story from the beginning: when she was about two months old or maybe just before, I noticed that her left leg seemed shorter than the other.

Also, when I changed her nappy I noticed one side of her bottom looked a different shape to the other side. I didn't mention this to anyone not even my husband as I thought perhaps her legs would even up or maybe she wasn't lying straight. However, time went by and at three and a half months her legs were still different lengths and by now she was putting on weight and it had become obvious that she had an uneven number of fat rolls on her legs, which weren't in line either. So I had done a little research about DDH and was slightly alarmed as these seemed to be possible signs. Off to the local GP, who totally dismissed it, pulled her legs around, asked if there was any hip problems in the family and said to me - a lot of people have one leg shorter than the other, a lot of mums bring their babies in because of this and if I referred her they probably wouldn't be interested. Come back when she's eight months because she'll be more mobile and you might find she'll still have uneven fat rolls even then. You believe what they tell you. After, her hip was clunking so badly one day that my husband could hear it across the room. Time went on, and as she put on weight at about seven months my mum noticed how her left leg looked a lot thinner than the right. She kept saying "I think you ought to take her back". I was reluctant because I didn't want them to think I was moaning about nothing, which is how I was made to feel. I watched her closely one weekend and she seemed to use her left leg a lot less and didn't move it in the same way as the other one. I went to see a different doctor, who referred her and sure enough she was eventually diagnosed with DDH confirmed by a scan, as we'd suspected. Lydia has a three year old sister Imogen, who had torticollis (wry neck) when she was a baby, which also went undiagnosed. Apparently there can be a link between this and DDH, but admittedly normally in the same child. As they say, a mother knows her child better than anyone.

Her hip was totally dislocated and her socket was shallow. Within three weeks she had an arthrogram (dye injected into her hip joint), a closed reduction to pull the head of the femur back into place, and a fibreglass cast from chest down to ankles to keep her legs in position. All done under general anaesthetic. The way she looked would have been a real shock if we hadn't done a lot of research, including reading and looking at pictures on the steps website prior to the operation. We left hospital that evening, but would she fit in her car seat We had hired a special car seat from the "In Car Safety Centre" but we still had to prop her up on a couple of cushions to keep her feet clear of the seat but there is no way she would have fitted in her first stage car seat.

Once at home we soon realised she couldn't sit anywhere, she no longer fitted in her highchair and she didn't seem comfortable lying down, especially as she'd started trying to crawl before she went in the cast. She was a little frustrated with the cast for a few days, especially as she couldn't roll anymore. My dad along with his friend made Lydia a hip spica seat. It is brilliant, we call it Lydia's chariot, it means she is able to sit up again, play with her toys and start to feed herself, just like other babies her age. When we first sat her in it she didn't stop smiling, she seemed so pleased with it.

We have been putting her on her front and she can push herself backwards, she's going to get arms like Arnold Schwarzenegger!! We have bought her some toys she can lay under to play with.

She didn't fit in her three wheeler buggy anymore, but luckily we had a Maclaren Triumph umbrella style buggy in which we used a thick piece of foam to sit her on and a cushion behind to support her, she enjoys many trips out which keeps us all sane. We do get a lot of looks and people asking questions though but you soon get used to it. When you say 'she had a dislocated hip' a lot of people think she's taken a tumble, just shows how unaware people are about it.

Changing nappies is a bit of an art. I have been using Pampers small baby size and cutting the tapes off, tucking these inside totally. Then using a large Pampers active fit nappy on the outside, as they are stretchy. This seems to be working well. Lydia is very bulky and is quite awkward to carry about, especially in and out of the car. I, too, am getting Arnie arms!! However, her sister Imogen has been very helpful, fetching and carrying things for me.

Now four weeks into it and Lydia has totally come to terms with the cast. We are very lucky though because she is such a happy and contented little girl, also a bit of a comedian.

She is helping us to get through this difficult time. It's true what they say "children cope so much better than we do". We also owe a lot to her grandparents as they have given us a lot of support. We have another three months to go with a couple of other casts, we're treating it as a challenge and I'm sure when we look back on this it will have seemed such a short period of time.

The following is just a personal account of how I feel but I expect others may feel the same if they have been affected. I feel very strongly that some how in the future there needs to be a way this can be picked up sooner. Where I live people don't seem to be very clued up on it, maybe if you live in a more populated area where they come across it more they would be. It would be good to perhaps have posters in doctors surgeries etc explaining what to look out for but more importantly that our GP's understand our concerns. My health visitor said - well we check them at seven months plus but I said - nothing against your profession but it needs to be picked up before then, as the later it is discovered the more treatment seems to be required. It's also such a shame if they are just becoming/are mobile to find themselves in a hip spica with very limited mobility. With medical advances happening all the time, let's hope the future brings good news.

Thanks for reading our story

Cara, Nick, Imogen and especially Lydia Russell

Olivia Pattison

D.O.B. 1st May 1998 Born with DDH

Olivia was born with a dislocated hip, it was not discovered until her 7 month check-up when they tested the hips.

Background
Olivia and I went along for a routine 7 month check-up, the health visitor rolled her hip joints as normal but this time she screamed with pain. We were sent for a routine X-ray which showed the dislocation. She had previously been tested at birth and at 3 months, however these tests did not highlight any problems.
Two weeks later we were admitted overnight at Broomfield Hospital, Chelmsford, where Olivia was given an arthrogram. This procedure meant she had to have a general anaesthetic and have a dye injected into her groin. More x-rays were taken to show how much cartilage was around the hip joint, we had been told that she may come back from theatre in a hip spica ( full body plaster cast), depending on the amount of cartilage around the bone.
Unfortunately she wasn't in plaster when she returned from theatre, we then knew that surgery was her only option. As she wasn't quite one year old, the consultant wanted to wait until she had passed her first birthday because he was concerned about disturbing the blood supply to the leg, which can happen if children are operated on too young.

At fourteen months Olivia was admitted to hospital for an open reduction operation. We had been told that she would be having the first of a two stage operation, the second stage would take place in six weeks time. We mentally prepared ourselves for six weeks of caring for her in a hip spica and then the second stage of the surgery and six more weeks of caring for her in a hip spica. The first operation where they remove the unwanted cartilage around the joint should of taken two hours, five hours later were called to the recovery room to see her, to our amazement the surgeon had decided to do both stages of the surgery at the same time, she was plastered from her chest to her toes on the affected leg and to the knee on the other, with a little hole for the nappy to go in.

To the best of our knowledge this is a very new way of doing the surgery and not many children have had the two stages done in one go.

Caring for her

The first few nights in hospital were the hardest as Olivia was getting a lot of muscle spasms, which apparently is normal after surgery. The nurses were excellent and gave her lots of pain relief. The hardest part for me was getting to grips with how to look after her in this huge plaster cast. It was like having a new-born all over again, learning how to change her nappies without assistance how to pick her up and put her down and especially how to entertain her, as she couldn't get into a sitting position.
Thankfully I had a guardian angel in the form of our local Children's Orthopaedic Specialist, I had so many questions for her and she made suggestions like what type of car seat to use and invest in a large bean bag etc. I really couldn't of got through it without her weekly visits.
Looking after a child in a hip spica isn't easy by any means and I think all parents should be prepared for this. We managed to buy the latest Maclaren Mistral buggy for her which she fitted in perfectly, and we fed her on a bean bag.

Washing was done with a flannel and hair washing took place at the kitchen sink, we used to lay her on the draining board on a pillow and towel and wash her hair over the sink. Seven and a half weeks later her plaster has come off and she is currently having hydrotherapy sessions and doing well, the operation has been successful so far.

Jodi Duckett (Olivia's Mum)

N.B. The views, statements and suggestions published on this website are those of individuals, as such they are not necessarily corroborated or endorsed by steps. Furthermore, medical information contained within 'your experiences' has not been validated by the steps Medical Panel.

Bryony's Story

When my wife Julia fell pregnant in the summer of 1998 both she and I were overjoyed. Our excitement was only slightly dampened when we given the news that Julia had fibroids and also that the baby appeared to have a right-sided clubfoot. We were reassured by advice that this was usually easy to treat with splints and physiotherapy. During the later stages of the pregnancy it became apparent that the baby was in the breech position and that the growing fibroids would prevent a normal delivery. Thus, a Caesarean delivery was arranged for April 26^th 1999.

Bryony was born at 11.15 that morning. She weighed 6lb 5oz and was so beautiful! The midwife checked her over a short while afterwards and said that the talipes was relatively mild, but that the rolls of fat on her legs were misaligned. This indicated a possible hip problem. While in hospital she was examined by two paediatricians. One thought her hips were normal, the other was not so sure. When the Hospital's Orthopaedic consultant examined her he said that the talipes might require surgery, but that physiotherapy & splinting would be tried first. He thought that both hips were completely out of joint. He said that it was difficult to say what treatment would be required and arranged an X-ray appointment. We were upset at the news, but the excitement of being new parents carried us through. When Julia and Bryony came home the reality of endless rounds of hospital visits and possible surgery began to dawn on us. However, we decided to be as calm about the problems as we could be, and tried to accept things as they were rather than curse our misfortune. I know that this is easier said than done, but I believe that even very young babies detect stress and tension in the parents. We feel vindicated in this outlook because hitherto Bryony has been so calm about everything!

Bryony had an ultrasound scan which was inconclusive and another consultation with the Orthopaedic consultant, who decided that it would be worth trying some "gallows" traction with a view to attempting closed reduction of the hips, followed by a period in plaster. Accordingly, Bryony was admitted to Eastbourne DGH during July 1999 to start her treatment. We were surprised to find that she didn't mind having her legs strung up in the air. Julia somehow managed to continue breast feeding (she could start a new career as a contortionist!) and stayed in the hospital for the whole 5 weeks that Bryony was there. Every couple of days the strings holding her legs were fixed further apart. After 2 weeks, the consultant said he would like to keep going with the traction and try to obtain full abduction of the legs (i.e. splits position!). We eventually reached this stage after a further, very long 3 weeks. Bryony was taken to the operating theatre to be examined under anaesthetic and hopefully have the hips put into joint. We were told that she would be in plaster from waist to ankle. After leaving her under anaesthetic in the operating suite (very emotional), we spent half an hour getting a few things in the supermarket and then returned to the ward expecting to wait around for ages. However Bryony was already back on the ward, without a plaster cast. The surgeon said that he could not be sure of getting the hips lined up properly so had decided not to proceed. Julia, Bryony and I went home later the same day, feeling depressed at the wasted 5 weeks, but relieved to return to normal life again. The consultant at Eastbourne decided to refer us to Great Ormond Street Hospital (GOSH) as he felt their expertise would be required to successfully treat Bryony's condition.

Up at GOSH the Consultant advised that Bryony would need surgery to correct her hips followed by a period in plaster. He couldn't be specific about what he would do because each case is different and the X-rays didn't always give an accurate idea of what is required. The surgery would be carried out one side at a time with a gap of a few weeks between each operation. The first operation would be at the age of 15 months, once the bones had had a chance to develop a bit more.

Bryony was admitted to GOS on July 9^th 2000 for a week of "gallows" traction to be followed by an operation to put the left hip into place. We were dreading the traction, because although Bryony had coped with it well in 1999, she was now much more active. She was put in traction just before bedtime on the day of admission. She cried herself to sleep that night, but this didn't take too long since she was very tired. For the rest of her time in traction she was unbelievably happy, enjoying all the attention from the nurses and twisting around, standing on her head etc. She ate very well too, especially liking the rather soggy hospital chips! The staff at GOSH were much more experienced with this sort of treatment and we were not so worried about leaving Bryony on her own for a short time. This was something we had found difficult to do at our local hospital, where the use of "gallows" traction was relatively unusual. Books and television proved to be very useful in keeping Bryony entertained. This takes a lot more time and effort with an immobile child, but is very rewarding in its own right.

On the day of the operation we got up early (after a sleepless night) and Bryony was released from her traction. We bathed her to remove the sticky bandages. She was given a pre-med and then we were allowed to sit and cuddle her for an hour or so before going to the anaesthetic room. This was the most difficult time for us. The time seemed to pass very slowly and it was hard to hold back the tears. When the time came, I took her to be anaesthetised. Bryony was given gas to send her to sleep, before the cannula was fitted and the main anaesthetic used. This happened very quickly, within 30 seconds or so.

The surgical procedure used for Bryony was open reduction of the hip combined with what is known as a femoral osteotomy. It involves removing the head of the femur and some bone to shorten it enough to line the head of the femur up with the hip socket. The femoral head is then refitted to the rest of the thighbone and secured with screws and plates, which are removed at a later date when the bone has healed sufficiently. A plaster cast is used to immobilise the joint for several weeks while it heals.

We had been advised that the operation would take at least three hours, so we spent the morning wandering around Oxford Street and Regent Street, looking for a video for her to watch. The three hours was not quite up and we had started to walk back to the hospital when the mobile phone rang. The operation had finished a bit early, and Bryony was back on the ward. We rushed back to find her lying on the cot with a great big purple cast from waist to ankle. When she saw us she managed a little smile and seemed quite calm. She slept for some of the afternoon and later on managed to eat a plate of chips and a bowl of yoghurt! She seemed quite happy watching the video we had bought. She was given strong painkillers for the first couple of days after the operation and did not seem to be in much discomfort. The next few days in hospital were spent trying to get used to dealing with a baby in plaster. Bryony accepted it straight away as if it had always been there! The cast was an "A" shape. This meant that she could not sit in a normal chair, buggy or car seat, as there was no bend at the waist. Consequently she was sent home in an ambulance.

Bryony soon settled in at home. We spent a week or two perfecting the art of nappy changes. Once the swelling from the operation had subsided, we found that a large disposable nappy would fit inside the plaster cast in the normal position but back to front so that there was more absorbent material at the front (Bryony spent most time lying on her front). We taped the edges of the cast with 'Sleek' tape and felt provided by the local community nurse. We also stuck a piece of incontinence pad inside the front of the cast as extra defence against leaks. We found that with this arrangement we didn't need to stick a nappy on the outside of the cast. It is definitely worth taking the trouble to keep the cast as dry as possible as it can be weakened if allowed to get wet, and also becomes smelly and irritating to the skin. We changed nappies every four hours or so, day and night (Bryony usually slept through this). To begin with we supported her in bed with pillows and turned her a couple of times at night to avoid sores inside the cast, but after few days Bryony managed to turn on her own and would quite often sleep on her side, with the cast leaning against the bars of the cot. For the first few weeks in plaster she woke during the night. At the time we thought that she was uncomfortable in the cast. However she was also cutting several teeth, and when the teething stopped, she usually slept through the night.

When the time came for the second operation we were much better prepared, but Julia was suffering from a tummy bug on the day we were admitted, so I stayed in the room with Bryony and Julia slept in family accommodation provided by the hospital. The operation went according to plan and we were quite surprised to be sent home after only four days, and by taxi & train rather than ambulance! We were worried about this but Bryony coped admirably and was clearly pleased to be home again. In fact the train journey was much less bumpy than going by ambulance and we'd booked first class tickets so there was plenty of room to spread ourselves!

Up to this point we had been using a pushchair to 'sit? Bryony in for feeding etc, but this wasn't very satisfactory so I decided to make a chair for her out of an old high chair that we had been given. I cut pieces out of each side and added extra padding and side supports so that she could sit astride the seat, a bit like riding a horse! I also made a much bigger tray to allow her to use the chair for both eating and for play, and she spent a lot of time in the seat for the next few weeks.

The area we found most problematic was travelling by car. We never found a car seat to use with the cast, because it was set with no bend at all at the waist. When you put her in any sort of seat, looking from side on she just became the third side of a triangle, if you can imagine that! In the end we just kept car travel to a minimum and Bryony perched astride someone's knee without a belt at all. Not ideal, and probably illegal, even in 2000. We did obtain a letter from the doctor to say that due to her treatment it wasn't possible to use a car seat, but whether this would have prevented prosecution if we were caught I don't know.

During the time in her second cast Bryony remained very content and slept well despite us changing nappies once or twice during each night. We continued to pay a lot of attention to keeping the cast dry, and amazingly made it through the six weeks without a single accident!

When the day came for the plaster to be removed we wondered what she would make of it, but Bryony made no fuss whatsoever about the plaster saw and X- rays. After a check over we could see that the wounds had healed well and that her legs looked different to the way they had been before the operations: her feet pointed the right way! The consultant was pleased with the way everything looked, and told us to return for a check up after a few weeks.

Bryony was soon back on her feet again and moving around the furniture, almost as if she hadn't been anywhere near a hip Spica cast!

Soon after the cast was removed we went back to hospital for precautionary MRI scan. Apparently DDH & talipes is sometimes associated with Spina Bifida, so although there was no sign of it externally, the consultant wanted to check her spine with a scan. This proved to be a stressful day, as the orally administered sedative Bryony was given to send her to sleep and keep her still in the scanner didn't have the desired effect! The nurse had to administer an intravenous sedative and found it difficult to find a suitable vein. Then the cannula collapsed and she only got half a dose. If the intravenous sedative didn't work Bryony would have to be admitted for a General anaesthetic: something we wanted to avoid. Fortunately she dozed off with about 5 minutes to spare and scan was done. A couple of weeks later we were given the all clear, as expected, but it was a relief nevertheless.

After this we returned to the Hospital for regular check-ups, and Bryony continued to make good progress, eventually learning to walk at 23 months old. She also received Physiotherapy and Hydrotherapy treatment at our local hospital, to help with improving the limb strength and range of movement.

15 months after the first femoral osteotomy, Bryony was re-admitted to GOSH for an operation to remove the metal work from her femurs. She only had to stay in the hospital for a couple of nights, and after a little scare, when she took longer than expected to get back on her feet walking, we went home, advised to just treat her like any normal toddler, which was a great feeling.

The mild talipes in her right foot hasn't required surgery. Although her foot is a slightly odd shape and Bryony occasionally complains of pain on one side, all the bones and tendons are in the right places, and all that is required for the moment is insoles to support the arches of her feet.

We return to Great Ormond Street each year for an X-ray and a check-up. This will continue until she stops growing. Bryony is now a happy, confident 8 year-old and leads a completely normal life: she swims really well, can ride a bicycle and do pretty much everything she wants, and suffers no pain. She still has quite a limited range of movement in her hips, and is maybe a little more prone to falls than her peers but the important thing is that her hips are stable, developing well and should last for a long time. The result really could not have been better; especially as Bryony's hip problems were at the severe end of the scale.

Bryony also has a little brother, born by caesarean, again because of fibroids in Julia's womb, and we are pleased to say that his hips are normal. Our local hospital carried out extra tests when he was a baby as a precaution.

If you're reading this having recently found out about your child's hip problem I can reassure you that there really is light at the end of the tunnel somewhere, and that the children who have to go through treatment for DDH cope amazingly well: they just seem to accept everything as if it were normal. In our experience, Julia and I felt that Bryony's calmness about the whole thing helped us to cope too, and looking back a few years later we have very fond memories of the times when Bryony was undergoing treatment. It was hard going at times but it definitely brought us closer together as family, and we'd go though it all again tomorrow we had to. We will of course be eternally grateful to everyone involved in Bryony's treatment, both at Eastbourne DGH and Great Ormond Street Hospital.

This content has been removed.

Please click here to return to the homepage.