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For children with a body harness or spica cast by hip dysplasia

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Hip dysplasia in one hip

Hip dysplasia in one hip: this is the story of Emma

  • No history in the family and no breech.
  • Discovered by parents themselves in combination with the physiotherapist and paediatrician.
  • Campspreider, spica cast, Campspreider
  • Treatment from 4 months until 1 year and 8 months. Check-up in six months’ time with the possibility of more treatment if the hip has not developed satisfactorily.

How it all started /Campspreider

Our daughter Emma was born on 20 September 2011.

For the first few months, Emma cried a lot and showed a strong preference for a certain position. The paediatrician identified a reflux (flow back of food in the oesophagus) and with medication and special food Emma already began to feel better.

However, something was still bothering us. There were moments when she cried and we were able to calm her by lifting up her legs and holding them spread apart. In performing a body check, the physiotherapist (who looked at her when she was holding herself in a preferred position), wasn’t sure whether Emma’s hips were developing properly. Fortunately the paediatrician listened carefully to our story and undertook an examination immediately. The echo showed hip dysplasia on her left side.

There is no history of it in the family and Emma was not born in the breech position, so we can only say that it was “Just a case of bad luck”.

When she was four months old, she began the treatment using a body harness (the Campspreider). We were worried, because we had heard stories about a lot of restlessness in the first few days. But Emma actually accepted the body harness from the start and it appeared that she felt more restful.

What we had to get used to at the beginning were the reactions of other people. The comment: ‘Oh, what a pity’ was one we heard a lot. We always explained that is only pitiful if we were to withhold the treatment because it would have consequences for her future. After a while we became immune to the looks and comments from people; we learned that these comments are (almost) always well intentioned.

For a short time there was talk about Emma wearing a Pavlik bandage. Emma suffered from eczema for a while, and the eczema stayed damp under the plastic edges of the Campspreider.

In consultation with the paediatrician she started wearing silk bandages (instead of leggings) and that helped her a lot.

Practical tips

From a practical perspective it took some getting used too. Because the carry cot was too small for her spread legs, we quickly started using the buggy. We could lay it flat and filled up the sides with rolled-up towels so that she was stable when she was lying down.

Holding and cleaning her also felt awkward at the beginning, but luckily we quickly got used to it.

The most frustrating thing about this period was travelling in the car. The people in the plaster room had stressed to us not to adjust the Maxi Cosi, because it would not be safe and would mean that you would be driving uninsured. We therefore took the body harness off when Emma had to go in the Maxi Cosi and put it straight back on when we arrived at our destination. It always felt a bit clumsy, for example when we went shopping and we had to put on the body harness on the front seat of the car.

When it came to her clothes we bought lots of new things. We didn’t have many dresses for her (with an older brother....), so it was a case of shopping around and trying out what was comfortable and fitted well. In the winter I used legwarmers to pull over the body harness, so that she had two layers to keep her warm.

The bean bag (like the one on the Kiek site) was very handy as an alternative to the rocking chair.

Traction

After 5 months of wearing the body harness permanently, it appeared that it was not having enough effect.

It was difficult for us to hear that she was to be admitted for 2 weeks of traction treatment and then would get a spica cast for 3 months.

Emma underwent the traction treatment very calmly. She accepted her ‘fate’ and slept, played and ate as if nothing was the matter.

The last days were more difficult for her, particularly because of her fully spread position. Emma has a cuddly monkey which is her big comfort, which she cuddled a lot during that time.

We were with her for the whole time she was in hospital (one of us with Emma and one of us with our elder son Stijn) and I think that this helped her feel safe in a strange environment.

When her legs were being bandaged (which had to be done once a day) one of us was with her to comfort her.

We drove her in her bed through the hospital so that we could, for example, eat as a family in the restaurant, but also to offer her some more stimulation.

It was good that by this time we had learned how to cope with the opinions and looks from other people....

Spica cast

Then came the period in the spica cast. We found it difficult to imagine what we could expect.

We were worried about her eczema, but understood that we had no choice. Luckily Emma didn’t have any problems with her eczema in the spica cast. Because it was in the summer, we stayed inside a lot and put her outside in the evenings when it was a little cooler.

We didn’t go on holiday that summer and didn’t take many day trips; but we did enjoy being together quietly as a family and enjoying the summer at home.

Emma’s acceptance of the cast and her cheerfulness made this period easy to bear.

During this period we didn’t take her to the nursery but took unpaid leave ourselves to manage everything.

Practical tips

She played in the soft-shell car seat (the one that is also on the Kiek website). We fixed this to a small chair (high chair from Ikea) where her legs hung precisely outside the seat; the height of the chair fitted perfectly under the coffee table. In this way she say at the table and enjoyed playing with fine motor-control objects, such as taking apart a wooden puzzle and playing with blocks. We stayed with her when she was sitting in this chair, because the chair could tip over from the weight of the cast.

We later found (on eBay) a tall high chair (made by a carpenter, especially for children in a spica cast or body harness) in which she could play and eat using a tray.

She really enjoyed going for a walk and a day at the zoo was a great success. She was unable to sit in our carry cot (with a deep seat). So we padded out our buggy with a narrow seat with a cushion in her back and under her bottom, so that she could sit in that (here too her legs hung just outside the seat).

For the day trips we obtained a dispensation from the CBR to put Emma on our lap in the car with a safety belt. On the Dutch CBR website you can download a brochure (‘Ontheffing systeem kinderbeveiliging’), in which it explains how to do this (there are some associated costs). We supplemented our application with a declaration from our orthopaedist and a photo of the safety belt and an explanation. She sat on one of our laps with our back against us (with us with the seat belt on, of course) and the safety belt was attached to our clothes (for example on the belt of our trousers). In this way, if there was an accident she would remain attached to us, without having to sacrifice any of the strength of the seat belt. We quickly received an official exemption from the Ministry for Infrastructure and the Environment, which we kept with us in the car at all times. We also informed our motor insurance of the situation and they have put a note in our policy.

As far as taking care of Emma was concerned, it wasn’t too bad, maybe because she didn’t have leaky nappies and we were pretty strict when it came to cleaning her and keeping her clean. We cut the nappies (size 3) into the shape of a round sanitary towel, leaving the sides intact. We heard from other people that it was handy to use a spatula to push the nappy as far in as possible. Our experience is that it is easier to do it with your hands, because you can feel whether the nappy is well spread and that there are no ‘lumps’ which create pressure points. It takes a little getting used to, but after a few days we began to get quite good at it. If you ensure that the elastic edges are well folded in, then it doesn’t leak. We put a size 5 nappy on over the spica cast, the edges of which we also folded inwards. We were given some sticking felt by the plaster room to change the edges of the spica cast. We did this once, but Emma didn’t like it at all so we decided to clean her even more often, so that the felt stayed clean. This meant that we decided to clean once during the night (luckily she slept right through it).

Emma always slept well with the spica cast on. At first we put cushions under her feet, to help prevent pressure points from developing. Emma just kept kicking them away.

We put a draught-roll between the bars of the cot, the height of which was just right (but was also good for our rest, because the roll stayed in place).

We didn’t make any changes to her clothes. The leg warmers that we used over the body harness when it was cold, could be used so that she had another colour to wear now and then. So that it felt a little more like summer, we cut off the legs of cheap leggings and put them on over the cast like ‘leg warmers’.

Another Campspreider

When Emma was a year old, the spica cast was taken off. For Emma, that was a difficult experience, because she was very frightened by the noise of the saw. We noticed this for some time afterwards, when we went for check-ups in the plaster room, but also when she was being weighed at the health centre.

Following the spica cast, we have now had another 8 months of a body harness, three months of which were at night. Night times were difficult for Emma in the last weeks. Because she wanted to be able to sleep on her side, the nights were very restless. That is why we then chose to stop the body harness treatment.

Her hip is still not as it should be, but the hope is that, by starting to walk, the head and socket of her hip will develop well naturally. In six months’ time there is a check-up and we will then hear whether she will be given the all clear. If not, then she will have an operation and a spica cast treatment.

Practical tips

Because it looked like it was going to take a long time, we decided to buy a better buggy for her. She was getting bigger and we really wanted her to be able to sit better. It was also more enjoyable for us to be able to walk with a good buggy. We went to test some in a big baby store and the Maxi Cosi Mura (the old model) seemed to be fine. We put a little cushion in ourselves, so that she sat higher and didn’t have the problem of the frame against her legs.

A drive in the car was now easier, because Emma could now sit in a group 1 car seat. We bought the Romer Evolva which, because it has no sides, Emma fitted well into her body harness. It is an expensive car seat, but can be converted, so that she can use it until she is twelve.

Our experience

Emma has made us very proud over last eighteen months or so!

She has undergone (almost) everything cheerfully.

In our opinion, hip dysplasia is not the worst thing that can happen to you. It can be difficult and demands creativity to make alterations and to ensure that your child is challenged to develop in as normal a way as possible.

At first we were unsure whether we would be able to cope. As parents you want the treatment period to be as short as possible. It is good to be able to depend on the plaster room; we always had the feeling that we could give them a call and drop in. They even helped us look for solutions to make Emma’s eczema bearable for her.

The limitations of not being able to cycle or swim were particularly difficult for us (Emma has never done these things and doesn’t know what she is missing).

The fact that Emma’s locomotion is underdeveloped is all part of it and we are confident that she will catch up in her own time. Her physiotherapist has also given her that confidence.

Through the whole process we have learned that it is important not to hold back your questions, disappointments and such like, but to share them with your orthopaedist. For example, when we saw the x-ray of the results of the spica cast, we were disappointed, in fact there was no visible change. Our orthopaedist explained that actually a lot had happened, because the femoral head had found a good place for itself in the acetabular cup. Understanding that gave us the courage to go on!

For now, for us it is a case of practicing walking and enjoying the next 6 months of life without a spica cast!