@DDHUK_
A REMARKABLE Stover School student will walk a mile with his classmates in aid of a charity he inspired.
Lucas Trice, a Year 2 student at the Newton Abbot school, has spent much of his life being treated for hip dysplasia.
To help raise awareness, and funds, of hip dysplasia, Stover School will be joining forces with DDH UK and on March 1, the pupils and teachers will be walking one mile around the grounds.
Read more at The Exeter Express and Echo
DDH UK AND THEIR PARAPLYMLIC SWIMMER PATRON FEAR A SLIPPERY SLOPE IS AHEAD FOR HIP PATIENTS
JANUARY 2017: DDH UK, the only charity in the UK dedicated to supporting families dealing with hip dysplasia, are gravely concerned about plans by the NHS to only refer patients for hip surgery if their pain is so severe it interferes with daily life or the ability to sleep.
In a cost cutting bid to save £2million a year*, it is claimed that health trusts are already tightening up their rules in a bid to slash operations by a fifth with others also looking to use a scoring system to rank patients’ pain for both hip and knee operations.
The charity is supporting more and more patients, from teenagers to those in their later years, who are facing hip replacements, often due to the effects of having hip dysplasia (DDH). DDH occurs when the hip joint fails to develop correctly and 2 to 3 in every 1,000 infants will require treatment* and whilst not life threatening, it can lead to pain, disability and the need for hip replacements.
Gemma Almond, DDH UK Patron and Paralympic swimmer who has bilateral DDH, said, “I find the new potential NHS rules worrying. Whilst in discussions with my consultants we have weighed up the level of pain for THR, it is the principle that underlie these new rules that is concerning. Pain is a subjective measure and decisions should be based on consultant / patient discussions about quality of life not funding. The decision is hard enough to make, without the need to justify it in monetary terms. As someone who will need two THR in the next few years, I fear this could be a slippery slope and a worry for the future.”
Natalie Trice, DDH UK Founder, added, “We are speaking to more and more people who are in constant pain due to hip issues, and are saddened to read about plans that could mean they have to wait even longer for the surgery they need to improve their lives and mobility. My seven-year-old son has DDH and to date has had five operations and we simply don’t know what the future holds and this news is really frightening for us because a hip replacement isn’t out of the question in the future and we don’t want him, and others, to endure years of pain unnecessarily.”
Natalie added, “We understand that cuts do need to be made in the NHS but we would ask trusts to consider not only pain levels but also the quality of life of patients and their every day mobility and independence when putting these criteria together.”
For more information go to www.ddh-uk.org, email natalie@ddh-uk.org or call 07825 615303.
ENDS
NOTES TO EDITORS
*Source – http://www.dailymail.co.uk/health/article-4162300/Hip-operations-banned-sleep-new-NHS-rules.html
DDH UK is the UK’s only DDH dedicated charity and one which supports families on their journey towards healthy hips. They work with professionals around the world raise awareness of this life changing condition.
DDH UK, originally Spica Warrior, was founded in 2015 by Natalie Trice whose son, Lucas, was diagnosed with DDH when he was four months and seven years on he is still on a treatment path.
Natalie is also a member of the International Advisory Board at the International Hip Dysplasia Institute and is the author of Cast Life – A Parent’s Guide to DDH
For more information go to www.ddh-uk.org follow @DDHUK_
For comment, images and interviews contact:
Natalie Trice
DDH UK
07825 615303
Lucas Trice, a brave Year 2 pupil at Stover School, has spent much of his life being treated for hip dysplasia (DDH), but this won’t stop him walking a mile in aid of his charity, DDH UK, on 01 March with his classmates. 
When Lucas was diagnosed with the chronic condition aged four months his mother, Natalie, was amazed at how little information and support there was for parents.
Developmental dysplasia of the hip (DDH) occurs when the hip-joint fails to develop correctly and it is 2 to 3 in every 1,000 infants will require treatment. Lucas was one of those children and to date he has had five major operations and spent over a year in casts, harnesses and wheelchairs.
Whilst caring for her son Natalie also wrote Cast Life, a book for parents and founded the charity which are both resources she wishes she’d had and ones that are now helping people around the world.
To help raise awareness, and funds,
of hip dysplasia, Stover School will be joining forces with DDH UK and on 01 March and all pupils and teachers will be walking one mile around the grounds.
Lucas said, “If I can walk one mile after all the operations I’ve had, anyone can. I am really excited about The Warrior Walk, it is going to be a lot of fun and I hope the money we raise helps other kids with poorly hips.”
Natalie added, “When Lucas was diagnosed with DDH I simply couldn’t believe the lack of help out there for parents. Over the past 12 months DDH UK has grown as a staggering rate and every day we are helping more parents, and patients. We are delighted that Stover School is getting in board with DDH UK and are hopeful that the Warrior Walk will allow us to get to the £5,000 mark we need to gain our charity number from the Charity Commission.”
David Burt, Stover School, added, “Lucas is an incredible little boy who is very much a part of not only Year Two but the whole school. We are very excited about hosting the Warrior Walk and hope it will become an annual event that not only our pupils will take part in, but the local community and DDH UK supporters around the world. We hope the money raised will allow the charity to grow and put this life changing condition on the map for once and for all.”
Natalie added, “While we are doing the walk at Stover, anyone can walk a mile in aid of healthy hips and we hope people all over the world will help us to help more people on their journey.”
For more information about DDH and to take part in the Warrior Walk go to www.ddh-uk.org or email natalie@ddh-uk.org for the sponsor forms and marketing materials.
Natalie and Team DDH UK
We are seeing more and more questions from ‘Pavlik parents’ so today on the DDH UK blog we are looking at what being prescribed a Pavlik harness means for you and your baby.
The main thing to remember is the every child is unique, every hip is unique and every treatment plan, you have guessed it, is unique. What we are talking about isn’t set in stone but we hope it will help you understand what is happening, why and that you aren’t alone.
If your baby has been diagnosed with DDH and are younger than 12 weeks old, there is a good chance your consultant will discuss trying a Pavlik harness as the first line of treatment.
If you have never seen a Pavlik harness, they are made from a sturdy fabric with a set of straps that are positioned around your babies shoulders, chest and down to the legs and feet, (picture the shape of dungarees but with no tummy or crotch, and you will get an idea of the harness).
The aim of the Pavlik is to be worn by your baby for 24 hours a day for several weeks, the straps are adjusted by your health care professional to ensure secure and sturdy support for the hip joints of your baby.
Your baby will now be in an “M” position or somewhat like a frog and this is to allow the hip to be held in the optimum position to encourage normal development.
Once the harness has been fitted, you will be told how long your baby is to wear it for, both in terms of hours in a day as well as overall number of weeks.
The hospital will arrange regular review points during this period to ensure the fit of the harness is correct along with ultrasound scans to see if progress is being made. The frequency may vary from hospital trust to hospital trust.
There is a huge likelihood that with a new medical diagnosis for your precious and beautiful baby that the introduction of this piece of material can feel both upsetting and overwhelming as well as a barrier between you.
Please don’t.
Having discussed a little about why the harness has been suggested and how it works let’s talk through our top tips to help you and your baby through these next weeks.
Firstly, I guess, my top tip would one that you actually can’t see.
Try to think about the harness as a positive thing, rather than a negative barrier. The Pavlik is going to be a part of your lives for potentially a number of weeks, if you are able to, think of it as helping your baby to try to develop those healthy hips that are needed.
Each day spent in the Pavlik is potentially one step closer to healthy hips.
The initial period of getting used to the harness will take you and your baby some time. The baby will be in a new position that may feel a little strange, they might be unsettled for the first few days, and you may feel anxious.
But, I promise you, it WILL get better.
This little person of yours will adapt so quickly to what will be come their new normality, possibly even quicker than you do.
The key words that will keep popping up are readjustment, adapting and resilience, both for you and your baby and the rest of the family.
So, back to the practical points of Pavlik harness use.
HYGIENE NEEDS
Bathing your baby whilst they are in a Pavlik is something that for a period of time that can’t be done,and there is no avoiding this as it is important for your baby to initially remain in the harness position.
So, looking after your baby’s hygiene will involve gentle washes. Using cotton wool and water rather than baby wipes is generally the recommended the way.
The most important thing is to ensure that all of your baby’s lovely chunky skin creases are really dry to reduce any soreness or rashes.
Some clinics may offer you the chance to bathe your baby whilst you are there for check ups, ask if this is possible.
Check these skin creases regularly to make sure they aren’t becoming red, if you should notice anything, please mention it at your clinic appointment or via the clinic contact details that you will be given.
If you need to clean any areas of the harness, should there be a nappy/diaper leak, the Pavlik should in the early days, remain in situ on your child, but cleaned using small amounts of warm soapy water and a sponge or soft cloth.
At a later date it may be possible for your health care professional to provide you with a second harness for these occasions. The soiled harness can be washed within a washing machine, inside a pillow on a very cool cycle, but it is best to check this with your clinician first.
NAPPY/DIAPER CHANGING
When it comes to baby nappy/diaper changing it might feel a little scary, your mind racing with lots of “how do I”, but don’t panic.
The advice here starts with the key words; PREPARATION and PROTECTION.
Before you begin, ensure you have everything you need and lots of it(and may not need but have as a just in case) ready like a scout about to complete a task!
Get everything ready and within easy reach for you.
A top tip that lots of Mums and Dads in the know use, and shared with us by Joanna Burkill, mum to Georgia who has just successfully been treated for DDH in a Pavlik, is to fashion a pair of leg protectors, like welly boots, from a couple of nappy sacks or try some adult socks. Just loosely tie them at the knee, before you open the nappy/diaper, they very cunningly can protect baby and the harness getting into a bigger mess than the starting point already is.
Please make sure that you safely discard and nappy/diaper sacks after use, so they aren’t a hazard to your now clean little one.
Your Clinician should show you how and remind you of the correct way to lift and move your baby when changing nappies/diapers. The technique is to use your hand on their lower back and bottom to lift the baby, not to lift each leg individually.
This is a perfect demonstration to ask for them to show you and for you to try whilst in clinic to ensure you are happy and confident to it when you are back at home.
SKIN TO SKIN CONTACT
The bond between baby and parent is heightened by having skin to skin time, the harness does not need to stop that.
Just adapt how you go about it, “think outside the box” as they say.
The loving touch can be experienced in slightly different ways than it was pre harness, tummy stroking, gentle massage on baby’s hands and arms and of course those all important cuddles and kisses.
Remember that the harness is there to help your baby.
CLOTHING
Buying larger sizes of baby sleep suits and vests is often the easiest way to dress your little one.
Making sure that there is no pulling or tightness from the clothing, leave a few poppers open if need be.
Girls have the option of larger dresses with socks or leg warmers if preferred, but that is just personal choice.
Boy also look super-cute in leg warmers.
The main thing to remember is that the legs need to stay in the M position so don’t go for trousers, tights or anything that will prevent a healthy, correct hip position.
SLEEPING
As your baby will be need to be positioned on their back for sleeping. This is to allow the harness hip position to remain as perfect as possible.
If you use any sleep positioning aids, such as pillows or supports, take them along to clinic with you so your clinician can assess if they need any adaptations or can continued to be used.
Sleeping bags are still useful IF the don’t impede of the leg position, you may find blankets easier.
CAR SEATS/PRAMS/PUSHCHAIRS
The key thing with your travelling accessories, is again that they are wide enough to allow for frog leg position to remain unchanged. You are trying to avoid anything that draws the knees together.
There is debate about the use of baby slings, discuss this with your clinician.
OTHER TIPS
Another great tip shared by Joanna Burkill, mum to Georgia, is to video the process of the harness application at clinic by the Health Care Professional.
This gives you a perfect reference point on what the harness should look like, any information that they may give you and provide you with the reassurance that everything looks ok.
You could also ask questions and by recording the session you will have your own personal reference library to refer back to when at home.
The Pavlik harness can have excellent success rates, but as ever, it is impossible to make a blanket prediction on whether the harness will work for your baby, as every case is different.
Your consultant will assess and discuss any progress that your baby is making with you.
WHAT ELSE CAN I DO?
To arm yourselves with information and to find the connections and support of people that have either experienced DDH, why not look at the information sections here on our website www.ddh-uk.org
Join our Facebook forum group and speak with other parents in a safe and supportive environment – the page is DDH UK Support Group.
Become part of one of our regional coffee groups and meet other parents and carers with their children for cake and play dates.
Remember, DDH UK is here to help and support you every step of the way, #becausehipsmatter
Happy New Year! And a happy, positive new-blog post to get the year started.
For this post I wanted to focus on keeping active, and swimming – and this has been the one I have been most looking forward to writing! We were always an active family throughout my childhood, and DDH did not get in the way of that. However, walking has never been easy for me so swimming quickly took over.
The hydrotherapy that followed my operations is my earliest memory of being in the water. From the dead/heavy weight of a cast, and then the seemingly even heavier weight of trying to get my legs to work again, water provided me some freedom and a chance to move without any restriction. It had both the physiological benefit of enabling me to learn to walk again, and, because I enjoyed it so much, a major psychological benefit. A photo of me sat on poolside a couple of months after coming out of plaster will always be one of my favourite photos and sums up everything – one of my bright red scars is very much there as a visible reminder, but it did not get in the way of a smiley younger-self because I was, quite literally, in my happy place. My love for swimming is one thing I am so grateful to DDH for, because it shaped the rest of my life and has been part of my happiest memories and experiences.
I joined my local club shortly following my operations and made my way through the swim school and into the squads (quicker than I should have thanks to my first coach understanding that I would never do a breaststroke kick properly – and I still can’t!) I found that rather than DDH dragging me back, it actually put me ahead of my peers because I had developed a strong upper-body to compensate for my legs (which can quite clearly be seen in that picture of me age five!). My early competitions and medals, even at club level, and then becoming county champion aged 10 against ‘able-bodied’ (although I don’t like to use that term) competitors will be some of my proudest moments. Yet it did make it all the more harder to accept when I got overtaken at about age eleven by the rest of my peers who could use their legs properly. It was then that I was introduced to Paralympic sport and regained my confidence by competing with those of the same ability. I got to travel the world both for training camps and competitions with people who have grown to be some of my closest friends. During the last five years of my career I was training twenty-four hours of week both in the swimming pool and in the gym, and this hard work paid off with a number of medals, , and competing, at a home Paralympic games in 2012. However, such work did take its toll on what is essentially an arthritic condition. I retired in 2015 not quite having achieved all that I wanted, but happy that I had definitely proved wrong those who said as I child that I wouldn’t be able to do any type of sport.
However, I do not want to just talk about my journey and what I wanted to stress through this blog-post is the key benefit that sport and keeping active has had on my physical condition. I have always been lucky at only four-foot eleven but I have also spent the majority of my life active and, especially in the last few years, devoted a considerable amount of time to doing physio and gym exercises to develop and build the right muscles to help stabilise my hip joints. Such work has resulted in a certain amount of leg strength and stability that I shouldn’t really have, and also a strong core, both of which has aided my general mobility a lot. Whilst I would perhaps not advocate the intensity of my previous training and would always advise getting medical opinion, I would encourage leading an active life with DDH to build muscles or strength (and my surgeon and those I consulted about my hips have always been very positive about my swimming career too). It is also the key thing I am most grateful to my parents for; it must have been difficult to not wrap me up in cotton wool but they really did the complete opposite and encouraged me to be active and get into sport – even if this did mean watching me flail about doing hand stands in a slippery paddling pool!
Today, I still swim as regularly as I can and do a lot of low-level exercises on my lower body and HIIT workouts to maintain fitness and general strength but ensure that I do not over-do it. I also have found a bike to be another activity that has given me another sense of freedom. However, I know from experience that some activities won’t work out, and swimming will not suit everyone and I, for example, always came last on school sports day (and there was probably something a bit cruel about given the kid with an uneven gait the egg and spoon event!) BUT there will be something out there for you. I went into sport for enjoyment and a sense of achievement and all these things are possible, regardless of any international sporting career. My advice to all living, and growing up, with DDH is to always seek some form of medical advice, but don’t be afraid to try out different sports and activities.
Why not make 2017 your year and do something you were told you couldn’t do or that you yourself didn’t think was possible. I will be joining you as I have entered the Great North Swim to raise money for DDHUK. I am also not the first to set myself a target for 2017 as Gemma Barber, an active member on the forum, has set herself the challenge of walking the Wirral coastline in June. Don’t go too big at first and pick something that won’t over-do it and is achievable for you. I, for example, have chosen to do a swimming challenge because I know that I can swim the distance but the open water element is something brand new (and slightly scary!) Equally, this does not exclude anyone going through operations throughout this year, as you can set your own personal targets in relation to your recovery. Remember all achievements are relative, do not compare yourself to others, and never forget how far you have come. Yet, most importantly, don’t let any negative comments hold you back, believe in yourself, and don’t be afraid to chase your dreams.
Happy New Year, and wishing you all a positive and happy 2017!
I will be keeping you updated on my journey to the swim event in June and would love to hear from you too.
Gemma
Did you know that whenever you buy anything online – from your weekly shop to your annual holiday – you could be collecting free donations for DDH UK?
Over 3,000 shops and sites are on board with easyfundraising and ready to make a donation. These including Amazon, John Lewis, Aviva, thetrainline and Sainsbury’s.
Each one generates a donation and it doesn’t cost you a penny extra!
Nothing at all. 
I know some of you do this already but if you don’t, it’s as easy as 1, 2, 3…
1. Head to https://www.easyfundraising.org.uk/causes/ddhuk/ and join for free.
2. Every time you shop online, go to easyfundraising first to find the site you want and start shopping.
3. After you’ve checked out, that retailer will make a donation to your good cause for no extra cost whatsoever!
There are no catches or hidden charges and DDH UK will be really grateful for your donations and it will allow us to create posters and leaflets, buy more loan out books, work with more parents and more medics.
It only takes a moment but believe me, it can change a life.
Thank you for your support.
Natalie
