Debbie’s Story

Hi my name is Debbie and I’m a 51 year old bilateral CHD survivor. I was diagnosed at 13 months old. I was admitted to the hospital where I stayed for six weeks in traction. I had a ten pound weight attached to each leg. At the end of of the six weeks I was put into a frog plaster cast and released to go home.

Over the course of the next two years I went through several cast changes. It was eventually changed to a shorter cast which stopped about mid thigh before I was able to come out of it completely. After the cast was removed I then had to wear a splint that kept my legs in the same position the shorter cast I was in. All of that was done and over by the time I was about 3 1/2 years old.

The doctor told my parents my left hip had gone back into place just fine but my right hip was still slightly out. He could do surgery or my parents could wait and see if it went into place as I grew taller. He said there was a 90% chance it would. Because of all I had already been through and the 90% chance it would go in on its own my parents decided to wait.

As time passed my right hip became more painful. At age 11 I went to an orthopedic surgeon and the xrays showed my left hip was fine but my right one was still slightly out. My first surgery was scheduled. A small part of the socket was clipped away and the ball of my hip was moved over. Two pins were put in to hold it there but were removed a few weeks later and I was on crutches for about a year.

The pain was better but always remained.

As the years passed I would dig my crutches out and use them from time to time. By age thirty seven the pain had reached a point where I could no longer take it and I was using a wheelchair when going anywhere that required a lot of walking. I went to see a orthopedic surgeon and this time the xrays showed my hip socket (what little I have left) is mostly flat and not much, at all, is over the ball of my hip and I have arthritis.

The recommendation was to have a pelvic osteotomy. After much thought I decided to have the surgery. That was 15 years ago. For the first few years it helped some. I live in constant pain which I have always have but since the surgery have lost most of the use of my right leg. I can walk but not without the aide of either a cane or arm cuff crutch. When I go shopping I always use one of the store buggies you drive and if there isn’t one I don’t shop. I was declared totally disabled in 2000.

I have two grown children 21 and 28 and two grandchildren 1 and 3 years old and thank God their hips are just fine.

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  1. Carol says:

    Hi Debbie, thank you for sharing your story. I too am 51. Had numerous surgeries. I too have a 28 year old. No grandchildren yet. Greetings from Seattle!! Carol

  2. Maria Campos says:

    This story uplifts me because my daughter will be having total hip replacement and she is 19 I was very skeptical. But after I read this story I see that there is still light ahead hopefully she is able to have a family that’s my biggest concern. Thank you for posting this.

  3. Yvonne says:

    Dear Debbie
    I have much empathy with you and your history but I had a total hip replacement at age 36 and that made all the difference. It is now 22 years old and is due for a revision. In addition my other hip has to be replaced too. It was never as bad as the first one but now I need them to be better aligned. I also had a knee replacement a few years ago. My son is 22 and is fine. I have a great-niece who has been treated for CDH and hopefully her treatment, dealt with early, will spare her the suffering we have had.
    Best wishes
    Yvonne age 59 in Australia

  4. Laura says:

    Hi, It’s good to hear your stories! I’m now 60 and was diagnosed with CHD at around 14 months – just couldn’t walk, kept falling over! I had 6 frog plasters and then an operation to pin the hip (Steinman pins). by aged 39 I had terrible osteoarthritis and walked with a limp (my left leg was always a bit shorter). I had my first hip replacement at aged 42 (JOY!)and then a revision 12 years later. I also had my ‘good’ right hip replaced 2 years after the revision as it too had osteoarthritis from taking so much of the strain all those years. now pain free, but know I will need a further revision of my left hip at some point in the future. the surgeon however made my right leg even longer during the operation so I have a 37mm leg length difference….that too causes problems walking with a built up shoe, but I am grateful for all the surgeries. Babies began being checked for hip issues on birth a year or so after I was born apparently.
    best wishes
    Laura, London UK

  5. Sherry Sechrest says:

    Hi Debbie,
    I just turned 50 & have been having issue’s with my hip since I was about 30 years old. I had dislocated hip which was discovered by my grandfather when I was in my walker that I only used my right leg to push the walker. My parents then took me to a specialist and after x-rays surgery was scheduled to break my leg & put the hip ball back into place & do what they could about the socket. I feel very blessed that over all my leg hasn’t effect my life until now. I have a son 28 & a daughter 26 no grandchildren yet but my daughter just got married this month so I hope in the next few years to get the news of grandchildren on the way. My greatest concern is being able to do things with them & helping my sister with our parents when that time comes. I’m now trying to find a doctor which specialty is CHD in my area. Thanks for sharing story & letting others know we are not alone.

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