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.
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.
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.
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!
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.
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!
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
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
Our journey with hip dysplasia started in 2010 one day after our daughter Addison was born. She was born with bi-lateral hip dislocation. She was put into a Pavlik Harness at 5 days old and wore it for 3 weeks. It corrected her left hip but the right was still a problem. She was put into a Hewson brace for 12 weeks and when that still didn’t work they scheduled a closed reduction.
We were devastated! As if having you first born baby in a brace wasn’t bad enough, we were now faced with having our sweet baby girl in a full body cast for 3 months!! What would we do?? How would we diaper, bath, feed, even go to the grocery store!! The day of her open reduction I was a mess! Addison was such a trooper though! She played in the pre-op room and was so happy (even without anything to eat.) All went well and we arrived home to start our journey. As the days and weeks went by things got easier and pretty soon we were pro’s! I swear I am MUCH better at diapering a casted baby than an uncasted one! When cast removal day came, we were ecstatic!! How great it was to have our smooshy baby back!! Addie had to wear the hewson brace full time for a few more months and then back to nights only. We were optimistic with each Dr’s appointment and really hoped our journey was coming to a close. Unfortunately, her hips were not progressing and a Salter Osteotomy was scheduled when Addie was 15 months old. We were so scared! I couldn’t even think about them cutting my daughter’s hip bones and pinning them without getting sick to my stomach. This surgery was so much worse than anything we had been through! Addie spent 7 days in the hospital and was in such extreme pain! It broke my heart to see her so miserable. At to top it all off…..she contracted staph while in the hospital!! She lost 4 pounds and was very sick! After about 14 days she finally started to get back to “normal” and the task of entertaining a toddler in a cast began! Luckily we only had this cast for 5 weeks. Addie is now 1 year post op and doing amazing! She started walking at 21 months and now you would never know that she ever dealt with this! She is such an amazing little girl. I am inspired by her spirit everyday!
Through all of this we have been amazed at the lack of information and consistent care in the medical community. Addie actually has CDH (congenital dysplasia of the hip) and her grandma had the exact same surgery in 1960. I’ll say it again, the same surgery 52 years later!!!!! How crazy is that?? There are so many children and adults that have this condition and the standards of care have not changed in over 60 years!!! With all the medical genius in this world, there has got to be a better way to help! I am committed to help One Hip World and the IHDI because I cannot bear to think of all the families that have to face this devastating journey!
What I have learned from this is that my baby girl is the strongest, most talented and amazing child! She suffered through all of this with humor, strength and tenacity! She got us through!
I am the proudest Mama EVER!
Of course I have to mention the support I received from friends, family, Hip-baby.org and the Baby Center community chat groups….without you we would never have pulled through this ordeal! God is great and has blessed us in more ways than we can count! We have a beautiful healthy amazing little girl and He pulled us up from the ditches over and over again!
Thank you for listening to our story!
We hope that all your little ones have continued success
and happiness through their DDH journeys!
After years of trying for another child with multiple
miscarriages, Aleena was our third child to join our growing family of
four. We were so excited the day we brought her home from the hospital
to awaiting older brother and sister. Each day that passed, our love
for our perfect healthy daughter deepened. By twelve months old she had
become the center of everything in our home. As she grew older into
her toddler years, like all parents we celebrated her first smile, first
laugh, and first step. As her new skills developed, her mother began
to notice peculiar habits begin to form in the daily routines of our
daughter. Never learning to really crawl, she moved about the house by
standing on her feet and walking with the help of her hands placed on
the floor, forming
the shape of an A with the bend in the torso of her tiny frame. At
fifteen months, she still struggled to walk like other children. Her
was accentuated by a gaited motion of her hips similar to the waddle of
duck. Repeated attempts to learn to run always ended with a loss of
her balance, followed by a crash to the floor. Multiple visits to
doctors, where we as concerned parents were always reassured the
symptoms would fade as our daughter aged. Finally, at two years of age
with the same symptoms of gaited walking, unable to run without falling,
and unwillingness to climb stairs, my wife insisted we see a
In the office of a pediatric orthopedic surgeon, we received the
devastating news of a child with misformed hips. Struggling to accept
cope with this new revelation, I now faced the daunting task of
discovering everything I could for the treatment for my daughter in
hopes of curing her
of hip dysplasia. A ten minute interview with this surgeon had changed
the course of our lives as we now struggled to accept and understand
why our future was to be consumed by surgeries and body casts for our
two year old daughter. Often reassured by families and friends, we
found little comfort in their words of council of a treatable defect.
The truth buried deep in our hearts, concealed the pain of facing an
uncertain future for our tiny innocent toddler.
before being diagnosed with misformed hips, we received the news of
another child to join our family in the following months. Our
daughter's second surgery was a blurr. In the weeks before her surgery,
our third daughter was born by c-section. My wife, determined to be by
our daughter's side, found herself recovering from her c-section,
caring for a new born child and comforting our toddler as she
laid in her hospital bed. At six weeks old, we had our new daughter,
Alexa, checked for hip dysplasia by our daughter's surgeon. Confident
of good news due to multiple checks by her pediatrician and nurses, we
had an ultra sound performed at the request of our surgeon. With a
saddened face, our daughter's surgeon broke the news of a second
daughter born with abnormal hips. Immediately our infant daughter was
placed in a harness which she worn for ten weeks. This time, early
detection has given as a bright future of perfect hips without the
surgeries and casts.
surgeries, coupled with eight months spent in five different body
casts, we now find ourselves veteran members of the growing hip
dysplasia family. Each day, our group acquires new families from all
over the world, seeking answers to their concerns of what hope is there
for their child. These new parents battle
with emotions and fear as they grapple the simple question, why? Across
the world, we reach out to each other for support, answers and comfort
as we share our personal stories of our children's battle to overcome
this defect. Each of us find strength to proceed as we follow our
children's lead. Our children demonstrate courage as they knowing await
their next surgery, next xray, or cast. They celebrate out loud when
they learn to walk, yet again. Over and over we set in doctor's offices
waiting for the results of the next picture of their bones to provide a
bases to determine our next steps. Each time we hand over our
motionless daughter, our hearts break as our eyes fill with tears as we
spend the next hours pacing the halls of the hospital wards waiting for
good news as another surgery is completed. Yes, DDH is treatable;
however we strive to educate parents and support organizations who seek
to raise awareness of
new and better methods to detect and prevent this defect. Join us in
building a better future for all our children.
To read more about Aleena and her journey, please visit:
The character of those associated with the IHDI astounds us !! They are so much more than just professionals using their gifts and skills to fight hip dysplasia....they are amazing people, using their hearts to fight it as well !
A meeting of esteemed doctors, experts and board members was held to discuss many 'hip' things, one of which was One Hip World. They have not only taken notice of what all of you are doing, they have taken the time to express their gratitude AND they have come up with a plan to make the best use of your love, efforts and funds raised !!
We love that they always remember that you and your child/loved one who suffers from hip dysplasia is so much more than a 'task at hand'. They know and use as a driving force that you are more than a statistic !! Every piece of research, every "power-enabling" piece of knowledge affects a person!
An adult...a teen...a child.
The following statement was released to us to share with you just a short time ago.....
of donations from any region will be used for research, education, and
developing best practices for treating and preventing hip dysplasia
worldwide. All affiliated research sites will benefit directly
from these funds. Therefore a significant portion of funds raised
regionally will go directly back to the sites in those regions. The
amount will be based upon need." - IHDI
This is AMAZING news !!!
A significant portion of what YOU raise in your region will come right back to the affiliate closet to you! The rest will stay with the IHDI to be used GLOBALLY !!!!
It starts with you....spreads to your home...then to your community.... then to the whole world !!
Thank you to our friends at the IHDI for their tireless efforts to help us all....thank you to everyone for your love and support, for choosing to take a really bad situation and make it better!!
For choosing to make a difference !!
Together we are building one hip world, by banding together to fight hip dysplasia in people of all ages !!!!