Information on DDH is rather scarce and likewise the impact that the diagnosis will have on the future of your child and the family can be difficult to find. Google DDH and you will probably be faced with results about dogs when all you want is answers to some pretty simple questions. When Erin was diagnosed I couldn’t find those answers and since that day I have shared our personal experiences in this blog. Now I want to put some of those posts into an index that will help you if you are on this journey.
1. What are the different treatments available for DDH?
The treatment depends on the age of the child at diagnosis. This post explains the most common types of treatment for DDH
2. How long will my child be in a spica cast?
This one is not so easy to answer as time in spica varies between treatments and also between surgeons. Rule of thumb is often 12-18 weeks after a reduction and 6 weeks after an osteotomy. If bilateral each hip maybe operated on separately so the time is even more dependant on the surgeon. One thing that is frustrating from a parents point of view is that there is no standard treatment. Each surgeon has there own ways of doing things. But Steps Charity will be able to help answer your questions too.
3. What equipment will I need when the child is in spica?
There are some basic things that made life easier for us. A car seat is probably the most vital thing that you will need and there are a couple of options available once your child is in spica. The Britax two way elite worked for us and we were given one by another family that had been through DDH. Look on the Steps Forum as they do come up for sale or some parents loan them out.
Steps also have a charity fund to help purchase a carseat and Maxi Cosi run a partnership to help parents – use the link below for information.
A beanbag is great as they mold to the child and help with sitting up. I used a doomoo.
For sitting at the table we used a Totseat which worked brilliantly.
Link for carseat information
4. What pushchair works in spica?
A pushchair will be needed. If the child is over the age of four you may find that you need a chunc wheelchair. Speak to the hospital and occupational therapy to see what is available to borrow or hire. If you child is still very young the chances are they will fit is your usual pram or buggy with some extra padding or cushions. Rolled up towels are great for putting under the legs to give more support. also a small cushion in the small of the back will help with positioning. If you have an older child you need to be more imaginative as the legs are longer and wider, however your normal buggy will often still work. See the link below for examples of how we coped and what buggies we tried with a big 2.1/2 year old.
5. After spica has been removed how soon will it be until they can walk?
This too is so variable and will depend on how long the child was in spica, how active they were in spica and also whether there are any other medical conditions. Also the age they are.
My Erin only started walking at 21 months and this was probably due to DDH and hypermobility. After being in spica for 18 weeks it took her six weeks to walk again. However after her salters osteotomy and 6 weeks spica she walked after only a few days.
I have seen many stories of children walking within days but equally some it can take weeks. However for children in spica before they are one most of these babies seem to walk at the same age of many of their peers without DDH which is pretty amazing when you think what they have been through!
6. What is being in traction in hospital like?
We didn’t have traction but it is still used in some hospitals for some cases. Here I have a guest blog from a parents that went through traction. It does seem that the children amaze the parents and cope with this better than you would expect.
7. Are we entitled to any benefits when my child is being treated?
This one is often a hotly debated subject as some children are awarded Disability Living Allowance and some are not. Also the type of award and length of award varies case by case. Erin did receive High Rate Care for a year whilst she was in spica. The condition needs to have been diagnosed for three months prior to application and the treatment must be expected to last at least a further six months. Therefore the time expected to be in spica and rehabilitation time needs to be fully explained in any application. It is best to use some support when filling in the lengthy forms. The CAB will help and there are groups online like CAFamily which offer good advice.
Getting a blue badge also makes life easier, especially as you need to open the car door wide to access a child in spica. Spica does come under bulky equipment for the purpose of getting a blue badge from your local authority. However 2-3 yr olds fall into less clear guidelines but I suggest applying once the child is in spica and adding a photo with the application form. We were awarded a blue badge and it came very quickly once I explained the urgency on the phone to the correct person.
8. What clothes work in spica?
This is wear I think it is easier for girls. Being in spica can be quite hot and therefore in the UK you don’t need to worry about them wearing anything on their legs. I frequently used the next size up dresses. I would pop a pair of leg warmers or big socks on just for vanity sakes. We had a bar at the knees but leg warmers still looked good.
9. How can I entertain a child in spica?
Simple answer is just like you would any other child. We still went went for walks, we made cakes, we coloured, we went to mother and baby groups and even soft play.
10 How do you bathe a child in spica?
The kitchen sink was the easiest place for me and Erin still enjoyed water fun. It was tricky at first but again you soon adapt.
11. Finished treatment and want to do more?
There is so much you can do to help spread the word and raise awareness. tell your story to the local press especially at key times like Hip Awareness Week. Tell other new mums and educate everyone you can. Support Steps in raising money and awareness.
Are there any more questions you have? Please leave them in the comments and I will try to answer each one. I am not medically trained this is just my advice and experience as a parent.