GUEST BLOGGER: DENISE SUTHERLAND

GUEST BLOGGER:  Denise Sutherland

HIP FOR A LIFETIME

I've had problems with my hips from birth. My dysplasia was picked up when I was 20 months old, and not walking properly. As I was my parent's first child, they didn't realise that what I was doing (or not doing) wasn't normal. It was my grandparents who raised the alarm.

Photo of me and my mum, in Canberra Australia 1969

The brown thing on my knee is a leather pad my dad made to protect the cast, 

when I went pulling myself about the place.

 

I had a lot of surgery, both in my native Australia and the USA, most of which failed. A tendonectomy, a failed closed reduction, two failed open reductions, and months in frog-leg plaster and braces. When we moved to the USA in 1969 (for a few years), I was seen my Dr Wayne Southwick at Yale-New Haven Hospital. He did an experimental technique on me, which involved serious traction (metal bar through my knee) rotating my left leg inwards with an open reduction, setting it, then a few months later breaking the femur and rotating the lower section of my leg outwards. Gruesome as it was, this did work! I was five. 

Dr Southwick said he thought the repair would last for about 40 years. I had about 20 years of reasonably normal hip functioning (although I've never been good at sports). I had a lot of hip pain during my two pregnancies, and had to have Caesarians, as my pelvis is very distorted, and no babies can get out that way. 

As was expected, in my 30s I started to develop osteoarthritis in the joint, and I spent a lot of my early 40s on a walking stick and then crutches. My poor old left hip was finally replaced when I was 45 (yes, exactly 40 years!). I had to have an especially small prosthesis, as my leg bones are abnormally small (common with dysplasia patients), and I have permanent hip restrictions. My new surgeon, Dr Damian Smith in Canberra, did a fantastic job with my very difficult anatomy. I chose him because he is a childhood dysplasia expert, and he really understood my weird mangled anatomy. Unfortunately my right hip has also developed dysplasia over more recent years, so now it is dysplastic as well, and showing early signs of osteoarthritis.

 My L THR, x-ray taken 2012

 

I get frustrated with people who think that once I had my THR, that was all my hip problems 'fixed' for good. No — this is just the start of my adult hip surgeries.  THR doesn't last forever, and it's likely that it will need to be revised (replaced) at some point, which is a less successful surgery, in general. My right hip isn't normal either, so that's another THR too. 

The most positive thing I've done as a result of my lifetime of hip problems is to write a book, http://www.lulu.com/shop/denise-sutherland-and-dr-sophie-west/a-guide-for-adults-with-hip-dysplasia/paperback/product-18753968.html - Guide for Adults with Hip Dysplasia. There were no books for adults with this condition - whether those who had been diagnosed and treated in childhood and now had more problems as adults, or for adults who had developed the condition in later life. 

I have been a member of the excellent Yahoo group,  http://health.groups.yahoo.com/group/hipwomen/, for many years (I'm now one of the moderators). It is a supportive group (with over 1,400 members) of women with hip dysplasia from all over the world. I thought it would be a great idea to pool our combined experiences and knowledge, and write a book for us. Soon after I started planning the book, I teamed up with Dr Sophie West from the UK. Not only is she a young orthopaedic surgeon, but she has bilateral dysplasia and has had two PAOs, so she really understands this condition from both sides of the operating table! 

The book took us two years to write. We've covered every single thing we could think of about hip dysplasia (which turned out to be quite a lot!). It is 456 pages long, illustrated, and written in easy to understand clear English, with a minimal amount of jargon. It includes over 400 quotations from other adult hip dysplasia patients, about their experiences and thoughts. It is so wonderful when we hear from readers how much the book is helping them, it's the best reward for us.

I was also thrilled when I discovered that the International Hip Dysplasia Institute had been started. There has long been a need for this sort of a professional group, that is closely looking at how to encourage early diagnosis and prevention of hip dysplasia, provide authoritative information for parents and adult patients, and undertake research into this debilitating condition. Dr Charles Price from the IHDI has been very helpful to Sophie and me; he reviewed sections of the book for us, and has been very kind in recommending it widely. It is great to have them by our side!

Denise Sutherland

Visit Denise at:  Sutherland Studios

Please look for Denise & Dr. Sophie's book,  Guide for Adults with Hip Dysplasia 

on our RESOURCES page !

Together we can....together we will !!

HIP HOPE HURRAY !!

GUEST BLOGGER: TEAM AVA

GUEST BLOGGER:  Team Ava

by:  Theresa Boylan

My name is Theresa and my husband is David. We are blessed with two phenomenal children Jack 7 and Ava 4. Overall both our children were healthy happy babies and have grown into healthy children. Ava was 8lbs 4oz at birth but as she grew was always a very petite baby, then toddler. By 18 months she was no longer on the growth chart and her growth had slowed tremendously. At first it was not a concern because the chart was moving (slowly) but around 2 years old she did not grow for almost a year. Around the same time she was becoming very verbal and began complaining of knee pain, leg pain, back pain and that her belly hurt. Some days Ava would be crying from the moment she got up, some days it would start later in the day. Whenever out she always wanted to be carried or in her stroller and cried her knees hurt too much to walk. By now she was on a weight watch every 3 months and I raised my concerns often. Unfortunately there were no visible signs of anything wrong and developmentally she was 100 percent on. Ava’s walk was off but after bringing it to our Pediatrician’s attention we were told she was fine and would outgrow it. Finally in January (2012) I requested that Ava be sent to a specialist to try and find a reason for her lack of growth, if nothing else put our mind at ease.

In February Ava had an appointment to see a Gastroenterologist and Endocrinologist to finally start looking for answers. She was sent for what blood work and a full body x ray to measure her bone age and to have a baseline of her bone structure in case it was needed in the future. I will never forget the call I received from the Endocrinologist at the end February, Ava’s bone age was at 2.6 years (she is 4.4yrs) and she had bi lateral hip dysplasia. We needed to make an appointment with a pediatric Orthopedist immediately. What!! How could that be possible! I was in shock. On March 12 Ava had her first orthopedic appointment. Of course I had done my internet research and read whatever I could about hip dysplasia. I was surprised on how little information was available and what I did find was not sounding good. Needless to say I was a nervous wreck. I knew in my heart that I was about to hear something I did not want for my daughter.

Upon meeting Dr. A we all liked him immediately, most importantly Ava did. We started with another x ray to see exactly what was happening with Ava’s hips. Dr. A reviewed the x ray and delivered the news I did not want to hear… Ava had bilateral hip dislocation that she was most likely born with. Tears sprang to my eyes immediately knowing what this meant… The only way to fix this was surgery. He proceeded to explain what would need to be done. Ava will have an open reduction surgery which included a Capsulorrhaphy, Abduction lengthening, a Pelvic Osteotomy and end with a Spica cast. In layman’s terms he needed to put the ball back in the socket and everything around it needed to be reconstructed to make that happen. Not once but twice and an approximate total of 12 weeks in the Spica cast. By the end of this appointment I did not hear a word Dr. A said. I was beside myself and walked out dazed. I sobbed the whole way home and for days after I could not talk about it without crying. How do I put my baby through this!! How was this missed for 4 years!!!

On June 12 Ava had her left hip surgery. It took 4 hours and 50 minutes…The longest of my life so I thought. I’ll never forget the feeling inside me seeing her in the cast. My heart broke for my little girl. All I could think was how will we do this!! Ava did amazing and came through with flying colors. We spent four days in the hospital and 5 weeks in her pink cast. On July 18 Ava had her right hip surgery which lasted 5 hours and 15 minutes. She spent only 3 days in the hospital and will be in her purple cast for 4 weeks. When they remove the Spica cast she will then have a Petrie Cast for another 3-4 weeks.

Having a child in a Spica cast is an emotional roller coaster. It has many difficult moments but you learn to take it day by day. My heart aches for Ava every day knowing the pain she has and will endure but children are resilient! They actually handle things better then you. You learn to stay positive for them even when you’re crying inside. It is so important to raise awareness on Hip Dysplasia. As a parent until the day I received that call I knew very little about it. Doctors need to explain what it is and the research needs to be furthered so treatment can get better. It turns out Ava had the “waddle” of dysplasia and other signs that were over looked. If I had the knowledge maybe she would have been diagnosed sooner. I am so grateful to the International Hip Dysplasia Institute. I have received so much information through their sight and links attached to it. No parent wants to put their child through this and it’s great to have the support you may need to get through it.

If you have a child that was diagnosed with hip dysplasia remember you’re not alone. There are so many people out there willing to help. Remember each case is different and you need to think as positive as you can, otherwise you will drive yourself nuts! My baby is on her way to recovery and I hope so is yours! Spread the word and stay strong!! XOXOX

Read Ava’s whole story at www.boylan2001.blogspot.com. 

Together we can....together we will !