Hip Kid! : *Home*...

Hip Kid!
*Home*...

HIP KID!

Hello and welcome to our site...

Introductions.

My name is Tracy Charlton, and I am joint-keeper of this site, you can email me if you need to (hipkid@zoomshare.com) and I will answer any emails or questions you may have.

My husband is Robert Charlton and the other keeper of the site, if you would rather have a man's opinion by email, please put 'f.a.o. Rob' in the subject header.

The star of the show is our Hip Kid!

Her name is Maia Willow Aelwen Charlton, she is our first daughter and was born 7th October 2004.

If you are a parent of a Hip Kid, or just having a nose at our site, please check out our Links section as there will be lots of useful places to visit for further information.

About the Site...

This site was originally intended to be all about us; displaying the latest news about the family.

We have since decided to blend what we feel are the 2 most important areas:

Our family.
Help and advice about a medical condition called Hip Dysplasia.

We have a daughter with this condition, and there is a distinct lack of information out there for parents.

So, we decided we wanted to be as helpful as possible to other parents. By doing this we hope to lessen the frustration for other parents we had felt when our daughter was diagnosed.

There will be regular updates to the site, so please visit us as often as you like. Feel free to post messages and any tips or hints you feel readers of the site would benefit from, if you would like images added, please contact us and we will do what we can.

Also, there is now a petition in place at the following link:

Petition for Blue Badges.

This has been set-up by two UK Mums Kelli & Helen who feel strongly about the lack of help that parents of HipKids receive, particularly with regard to parking permits (and rightly so!).

We have all struggled to get our casted/braced/harnessed child in and out of a car when someone has parked next to us, and why should we when doing so could damage any treatment they are undergoing? Please sign the petition if you feel the same way.

About Hip Dysplasia...

Firstly, none of the information we have written here is meant to replace professional medical advice, we are merely trying to put information down we wish we'd had access to when our daughter was diagnosed.

Hip Dysplasia, sometimes called DDH, CDH or Clicky Hips, is a condition which can affect anyone.

Although there is currently more information about this condition in canines than in human infants, it is not so rare that your local Pediatric Orthopaedic Specialist won't know what it is.

Most conditions thankfully get picked during the first year of an infants life, although there are cases that slip through the proverbial net.

Hip Dysplasia is one of things your child will be tested for briefly after birth, by the Ortolani / Barlow test. This test involves the movement of the legs in a specific way, to detect if there is a 'click' or 'clunk' as the hip joint moves in and out of the socket, or even if there is limited abduction (the legs cannot be spread very wide).

There are other factors which can show there may be a possibility of Dysplasia:

Positive family history (both myself and my sister had hip complications).
Uneven creases in the folds on the the thighs.
First born female.
Difficult delivery of baby.
Low levels of amniotic fluid.
Breech baby.

There are also different types of HD;

Congenital (present at birth).
Developmental (develops or occurs after a period of time).
Unilateral (affecting one hip).
Bilateral (affecting both).
Subluxating (the top of the femur cannot stabilise due to shallow hip socket).
Dislocating (will align but will then slip out).

In my daughter’s case, she has ‘unilateral subluxating hip dysplasia of the left hip’.

I have recently been informed by the Mum of another hip kid, that children with Cerebral Palsy may also be more likely to develop HD.

This is particularly correct if they do not bear weight, as even though they may undergo various closed or even open reduction surgeries, the muscles may eventually tighten up again and render the operations useless, and so the treatment has to begin again.

Treatment.

Fortunately, HD can be treated. It is a long process; months rather than weeks, but infants almost always go on to have completely normal hips at the end of it. As with the many different types of HD, there are also many different ways of treating it. Remember, we are just parents, so for more technical information speak to your doctor.

Splints / Braces: These come in a variety of shapes, sizes and designs. There are those that are like plastic nappies (Rhino Cruiser/ Hewson), some that look far more complicated but essentially acheive the same result, and some that are merely a bar which stretches between the knees or ankles. All are designed to restrict movement, some only slightly, so that any movement that is allowed is beneficial towards stabilising the hip. Some cases of HD only require this treatment. They can be removed for nappy changes and baths.

Pavlik Harness: Unfortunately I do not have a picture of my daughter in hers. They are made of fabric, fit like braces over the shoulders and attach to the legs. Sounds odd but they are proven to be very useful, and can be removed for nappy changes and baths if your doctor allows. Some cases of HD only require this treatment, however, if your child is older than 6 months, it is doubtful the harness will be used as it may not work; they work best on 0-6month olds.

Traction Therapy: My daughter never had this treatment (as yet), and it is doubtful that she will require it. Traction becomes necessary when the hip cannot stabilise in the correct place, as the muscles have become too tight / short. It can either be done in the hospital, or if your Orthopaedic Pediatrician allows, at home. It is set up by the Ortho Doctor, and is maintained for the length of treatment prescribed. The child's legs are placed into the optimum position and are gradually altered over the course of the treatment until the muscles are stretched enough for Reduction surgery to be completed. The child has to remain in traction for the course of the treatment, with only small breaks allowed. Dependant upon the individual child's needs the length of time required in Traction could be anything from 2 days - 4 weeks, although the most common length of time is around 2 weeks.

Closed Reduction: This is an operation that is completed to place the hip in the most stable position, to allow it to strengthen further. Although an operation, it does not involve any open surgery, so the child will not have a wound afterwards. It is called 'Reduction' as the hip is 'reduced' to the best position to encourage stability. The Reduction is necessary before any Brace / Spica is fitted, as it is the goal that not only will the hip remain in this position (hence the need for a brace or cast), but that the hip continues to develop in a way that is beneficial to its eventual 'normal' stability.

Adductor Tenotomy: This is a tiny cut that is sometimes made in the muscle to allow the legs to open more, so the hip can be ‘reduced’ to the right position. The cut is made on the front of the body, in the fold of skin which joins the groin are to the leg, and is usually no more a centimetre long.

Open Reduction: This is usually when a Closed Reduction has failed. It is essentially the same process, however it is an open operation where an incision is necessary.

Spica Cast: This is a plaster cast like you would have if you broke your arm, but it is placed on the child and goes from their abdomen down to their legs. Dependant upon the treatment they may only have a cast to their knees, or like my daughter, to their ankles. They may have a bar placed across the plaster to strengthen it, or it may simply be reinforced with scotch-cast. Spica Casts are always placed on a child after an operation to stabilise the hip, and sometimes when the cast is removed a brace can be used.

Osteotomy: This is when all else has failed, and the doctors need to surgically make space for the hip to fit into the socket. This is usually completed when the child is older.

Our Story.....

Maia had a Pavlik Harness on for a few weeks, but she was already almost 6 months old, and it made no difference to her condition. She had a Closed Reduction, Adductor Tenotomy and was placed into a Spica Cast in March 2005 for 16 weeks.

She had a cast change at 8 weeks, to allow for growth. Her cast was removed on 5^th July 2005, and we were told she would wear a brace for a further 16 weeks.

After your child is diagnosed, you will either be sent for ultrasounds or x-rays. This will determine the extent of the problem, and the treatment he or she will receive.

You will be given appointments to see a consultant in the Orthopaedics department (please ensure you see a Pediatric Orthapaedic Specialist), and will have discussions about the treatment and the opportunity to ask any questions you may have.

If your child is to have an operation, you will have to go in a week prior to this for a Pre-Op Assessment, this is just to see what health the child is in, if they are fit for an operation etc.

Again, you may ask questions, however, it was during this time that we began to see what lack of information there was about HD, as although the nurse was as helpful as she could be, she had little reference material and no information at all about the practicalities such as;

Would baby still fit in car seat in their cast?
How on earth would we put nappies on her in a cast?
What clothes will she be able to wear?
What can we put her to sleep in?
Will she fit in her pushchair?
Can we bathe her?
Will she fit into her highchair?

It was after this visit that we did a huge amount of research, joined various support groups and basically got as much information as absolutely possible that could help with the day-to-day coping with an infant, not only with HD, but in a plaster Spica Cast. We shall list all the tips we found useful further down this page.

The day of the operation, we went in early in the morning and luckily due to her age Maia was one of the first that would be seen, as they try to do the younger babies first as they cannot go for long without a feed. We had received a letter prior to the operation saying we could not feed Maia from midnight the night before, but after telephoning the hospital to query this, we were told to wake her at 3.30am and give her a feed, but that she could not have anything after 4am.

We were asked questions again about her health just to double check, she had ‘magic cream’ placed on her hands and feet where they may need to put a needle, and then we were taken to the ward. This cream is left on for about 20 minutes, and numbs the area for up to 6 hours.

When it came time for Maia to go to the operating room, I was allowed to go with her. As she would be having a general anaesthetic, I held her while they gave it to her (gas via a mask over her mouth) and when she was asleep they took her to the table and I left. She became distressed when they placed the mask on her, and I admit after leaving the room I cried for a long time. But I truly believe that she was only upset at the smell, because the stuff really smells awful.

The procedure took about 90 mins, and then we could go and fetch her. She was very groggy and the plaster felt cold and damp. It was a very hard day, and this is why we are trying to be as descriptive as possible, to prepare parents for it.

After an hour we gave her a feed and she slept. Although miserable, she seemed fine and we were allowed to go home the same day as the consultant was happy with the operation, and confident we could care for her at home.

We were also given a seat for her by the hospital, called a ‘Perch’. I hated it when I saw it, and thought ‘there is no way I am going to use that’, but it has come in so handy I’m glad the nurse talked me into taking it home! (Please see Pics page for photos).

The 24 hours after we got home were also hard work, as we had to learn everything all over again. How to change her nappy, how to hold her (the cast weighed a tonne!), how best to lay her down, how to sit her up etc. Plus she was still very groggy from the operation, but moreover was frustrated as she couldn’t roll over or move much anymore.

Within 3 days our normal smiley girl was back, and it was as if she has been in a cast all along. We soon got used to doing everything and she got used to being in the cast. After a week we went back and had the cast reinforced (this can only be done after a few days as the plaster has to be totally dry) and everyone remarked at how happy she was.

After that it was 7 weeks until the next appointment, which would be a cast change. This too has to be done under general anaesthetic, so it was the same procedure again. However, this time, she was fine within 2 hours of coming out of theatre, laughing and smiling.

Although still a bit groggy, she did not have to adjust again to restricted movement so this time was much easier and we were home again the same day with a smiley baby. The cast was reinforced after a few days (this time in pink scotch-cast, bit prettier and Maia loved it) and the removal appointment was scheduled.

The time totally flew by. The first few days were slow, and it was a relief to tick a day off the calendar, but after the initial adjustment period we soon found our feet.

Practical advice.

Depending upon the age of your child, and the type of treatment they receive, you may not need these items, or you may need extra that I haven’t listed. It is trial and error until you find something that works, but this is what worked for us;

Bebe Confort Iseos TT Car Seat: We managed to get one of these second hand off eBay. They are from birth-4 years and have sides that can open out wider than a normal car seat, and can accommodate a baby in a cast. Before Maia went into the cast we had a Graco Travel System with a Car Seat that clipped into the Pushchair, she no longer fit in either of these once the cast was on. The Bebe Confort is expensive to buy, but they last until baby is 4, so you will get your moneys worth, they have also won awards for their safety.
A cheap buggy (umbrella stroller): We found after Maia went into her cast that she would not fit in any of the ‘trendy’ pushchairs or travel systems. For a while we used a really old Pram, which was great but it was huge and bulky and difficult to manoeuvre. We ended up putting Maia in and out of all the pushchairs (strollers) in Mothercare (I’m not joking, all of them!), and the one she fit in best was Mothercare’s own for £35!
Orthopaedic V shaped Pillow: You may already have one of these at home, particularly the ladies might have used them when pregnant, they are ideal for propping up baby to sit up or to put in cot to allow them to sleep comfortably.
2 different sized nappies (diapers): Before going in cast Maia was in size 3 nappies, afterwards we discovered the best thing to do was double up. We tucked newborn sized nappies inside the hole in the cast in the nappy area, and then placed a large size 6 nappy over the top of the cast to catch any leakages just in case. In the whole 16 weeks, we have only had 2 accidents with this technique.
Cheap Sanitary Towels: We bought Asda’s (Wal-Mart) own for 17p per pack for 10. These can be cut in half and put around the opening of the cast inside the nappy at night for extra absorption, this has helped us not have to get up during the night to change her nappy, despite being told we would have to change her at least once during the night. She has not had a single rash so it obviously works!
Spica Chair -The Perch: If they offer it, take it, if they don’t, demand one! If anything like Maia’s cast, baby won’t fit in their usual chairs or high chair, so this is a must have. It is ideal for feeding and for play.
Bean bag chair: I have hardly used mine to be fair, but my friend with an older hip baby swears by hers.
Oversized Vests and Babygrows (Onesies): We bought the next size up to what she should have been in and these fit fine over the cast.
Hairdryer with cool setting: Just in case the cast gets wet, you will have to dry it out in case it weakens, I have never had to do this thankfully, but I know people who have.
Disabled Living Allowance: (UK Parents only); Finally some good news, you will be entitled to this benefit. You can get forms by calling in or telephoning the Department for Work and Pensions, or can download them from the website. It takes a while to come through (ours took 2 months) but they do backdate it to when your child started the treatment, so you will be able to afford all the new stuff you may need to buy.
Tax Credits: (UK Parents only); As well as D.L.A. you are also entitled to the higher level of tax credits, make sure you telephone them and tell them the situation so they can update your award.

Other tips.

When you pick the baby up, make sure you support the cast as well as the baby, as the weight of the cast it too much for baby to take the strain of.
Casts can cause plaster sores, if you’re child is unusually upset and the cast has started to smell, take them back to the hospital and tell them.
Pinch your child’s feet gently every day, if the colour comes back almost straight away that is fine, but if the white depression mark stays the cast may be too tight and need changing, call the hospital.
When putting on nappies, make sure you use lots of cream to avoid nappy rash, and check as much inside the cast as you can for leakages and clean them as best you can.
Even though baby is unable to roll over or sit up, they can bounce! Be careful never to leave them somewhere they can hurt themselves.
If child has an Adductor Tenotomy, they will have a small wound in the nappy area by the leg, obviously this will be hard to keep clean but I used alcohol free antibacterial wipes to clean Maia’s and luckily we never had any problems (plus because they’re alcohol free they don’t sting).
It is near impossible to put trousers on a baby in a cast, unless you are very inventive or gifted with velcro and a sewing machine! For baby boys I’d recommend vest and baby grows, for girls it is easier as dresses and skirts still fit over the cast. For older boys perhaps the tracksuit trousers (jogging pants) with the poppers down the legs would work.
Show all babysitters how best to do things as they will be unsure and probably very nervous of dealing with the baby in the cast at first.
When changing nappies, rather than lift baby up, it’s much easier to tilt baby to the side.
Remember it will get easier, try to stay calm and keep your chin up, before you know it you’ll feel like professionals!

Maia had her cast removed on July 5^th and her brace was fitted. It has been another learning curve but nowhere near as drastic as the cast, in fact it has been a lot of fun. Maia is a wriggley baby again and is starting to develop normally as a child without HD, she is starting to sit up without support, and we believe it is only a matter of time before she is crawling, even in the brace! She has to wear it full time at the moment, and her next hip-check appointment is for 6^th September 2005 where we will hopefully be told she will only have to wear it at night for the remaining 16 weeks. We can remove the brace for baths and nappy changes, it is easy to put on and take off and Maia is not bothered by it at all. She now fits into her high chair, both pushchairs, carrier sling, portable highchair and car seats. All in all, in spite of the stress at the beginning, we can honestly say that it has been easier than we thought it would be. I’m not saying it wasn’t hard, but our imaginations ran away and we assumed the worst scenarios would be everyday occurrences, when in fact they were random and very rarely happened, if at all.

If you have any suggestions, questions, or comments, please do not hesitate to contact us via email on:

hipkid@zoomshare.com

Keep checking the site, particularly the News page for latest updates on Maia, and any new relevant information regarding Hip Dysplasia.

Take care and best wishes to all of you and your families......

Tracy, Rob, Maia and new arrival Cadence. x x x