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DDH UK Facebook Forum Hits New Heights

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What do 1156 people have in common?

Well at time of writing this post, that was the amazing number of members that our Facebook forum now has, and at DDH UK we can hardly believe it and are absolutely delighted.

The growth of the forum has been phenomenal, and within recent months the numbers have gone from strength. It is incredible to think that over a thousand people have come together to share their hopes, experiences, concerns and emotions and what a community we have become.

When Natalie started the Facebook forum, over 18 months ago, she was a woman on a mission to put DDH on the map, both with the medical world but also as a signpost for parents.

With her book, Cast Life, being published and distributed worldwide, the development of the DDH UK website and writing accurate easily understandable information for parents, carers and sufferers of DDH Natalie was a busy woman indeed.

All of this was going on whilst being a mother, a wife, a business owner and continuing to be her son’s advocate and carer. Oh and navigating a relocation to Devon.

The birth of the Facebook forum was a way to help bring people together that were experiencing the rigors and worries of their child being diagnosed with DDH, a place of support, advice and connection. The things that Natalie needed and wanted when her son Lucas, now 8, was diagnosed with DDH as a baby.

Over the past year and a half, the forum has grown both in number of members but also in the support that is offered.

We have found that now we not only offer help to parents but also patients and links are being made and gaps being filled.

We are an International group, we have friends now from the UK, Ireland, Malta, New Zealand, USA, Canada, Australia and even Japan.

The group has a team of International admins who work tirelessly to monitor the page 24 hours a day. They respond to member questions or link them to others that may have already been through a similar experience.

There are regional (and country) messenger groups that allow local people to chat together and arrange meet ups.

Karen Kerr and Stacey Vassallo are both great members of the team and offer a one to one private messenger buddy system to help parents and carers through the difficult times if they need to talk about things. Karen has recently written her book, Spica Warrior, and Stacy has done some amazing fundraising work with her son – more of this in the next couple of weeks.

DDH UK launched the ‘Dine With DDH UK’ earlier his year, which sees a monthly voucher awarded to a family for them to enjoy a trip to Pizza express as a family.

We also have the “Coffee and Cake On Us” which is a Costa Coffee voucher that we send members that we feel could use a little boost.

Erin McHugh runs a separate Facebook group, ‘DDH Equipment to Buy, Donate, Sell or Swap in the UK’ that is a safe place to share, research or search for equipment that you may need.

There are so many new projects in the pipeline and exciting announcements, including a brand-new award, coming very soon so watch this space.

This DDH army grows daily, we, together, like the children that we care about are unstoppable.

Thank you for being part of this amazing group of people and showing your support, sharing your experiences and being part of our DDH UK family.

Team DDH UK

New DDH book on the block

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It is a while since the last DDH UK blog post, but we are back and with big news.

One of our team, Karen Kerr, has been in the spotlight over the past month and for good reason. Spica Warrior

Karen’s daughter, Lauren, has had a lot of treatment for DDH and today is the most amazing little girl with a smile that lights up the room and a passion for life that is wonderful to see. Her hips are now healthy and see her dancing, jumping and leading a full life. However this wasn’t always the case.

Karen and her family found little help or information when they were on their journey with Lauren and this brave mum decided to put a change to that and has written ‘Spica Warrior’.

The book use clear, easy to understand language and the bright, colourful characters jump of the page and put a smile on your face.

Karen said, “Spica Warrior” is a step by step guide story for kids diagnosed with Hip Dysplasia. It helps them come to terms with the fact they need surgery and a Spica cast in a fun way with the Spica Warriors. It’s an aid to try to make this part of the journey less scary. It also helps parents tell kids whats going to happen as parents can’t always find the words. There is also a foreword written by my daughter’s surgeon.  I wrote this book as DDH can be a difficult, lonely journey and I wanted to use my experience to help as any families as possible!”

There is no doubt that this will be a well received book in the DDH community, not only in the UK but around the world.

We wish Karen all the very best with this venture and are sure that it will be a huge success.

The beautifully illustrated book can be purchased direct from Etsy and is £5 plus shipping worldwide.

Team DDH UK

DDH UK is in the news again

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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

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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

nataliejtrice@gmail.com 

07825 615303

 

 

‘IF I CAN WALK A MILE FOR HEALTHY HIPS, ANYONE CAN’

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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.  Stover-School-DDH-UK-Warrier-Walk-2017-ONLINE-2

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

 

 

Pavlik Life

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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