Tuesday, February 27, 2007

Congenital Dislocated Hip

Anybody ever heard of that?

Both of my daughters were born with it. Basically it's where the baby develops so quickly in the womb that one or both hip sockets don't form or only partially form.

We found the problem with Number One Daughter when she was four months old, and her left hip socket hadn't formed. The cup one should have on the pelvis wasn't formed, and the ball on the end of the leg bone that should be in that cup on the outside of the pelvis wasn't there either.

It turns out they are formed mostly from pressure of the compact space of the womb forcing the leg bone to be in there. Her left hip hadn't formed. At all. The first x-ray was very frightening to us, but to make a long, long, long, story short, congenital dislocated hip is not life-threatening, and it's fixable, the more so the earlier it is discovered.

All of the ways in which Lovely Wife and I are convinced that God moved in dramatic ways with these two girls as babies is the stuff of a very long post. Probably several.

Both girls were patients at Texas Scottish Rite Hospital For Children in Dallas, Texas. Dr. Roach, their pediatric orthopaedic surgeon was one of the best in the world, and every appointment had about 7 or 8 of us in an examination room because he had 4 or 5 observing pediatric orthopaedic folks from all over the world with him. Every single time. They came to learn from this man. Believe me when I tell you, if something's wrong with your kids, YOU WANT THE DOCTOR THAT EVERYONE WANTS TO LEARN FROM.

Since Number One Daughter was four months old when she was found to have this condition, she had to go through more stuff getting fixed than Number Two Daughter did. Number Two Daughter was x-rayed at only a week or so old and they were able to help her by only requiring her to wear a Pavlik Harness for a few months. The photo to the right is Number One Daughter wearing her Pavlik Harness. (I blew the exposure and almost whited her out, but you can still see the harness.) It basically held their legs in a position like a sumo wrestler squatted down ready to charge. This, and the natural figety-ness of infants caused the legs to be held in the perfect position to cause the pressure to form the needed cup and also the ball to make up a single hip socket to form on its own.

For Number One Daughter, the Pavlik Harness didn't work. The next step was that she had to be in traction for several weeks and then they put her under anesthesia, and prepared to place the hip socket surgically. While under anesthesia, they first try to manually place the leg into the proper place, and for her this worked and Dr. Roach said it felt nice and sturdy, so they didn't have to open her up in surgery. They just placed a cast on her from her waist to her ankles with an opening in the cast for calls of nature. That photo on the left is Number One Daughter in traction. We took her out to bathe and sleep, but the rest of the day for several weeks she was in this contraption to loosen up the tendons and ligaments of her hip sockets for the (possible) surgery.

Number One Daughter was in this first cast for about three months, if my memory is correct. They removed the first cast (she's in it, pictured here with me on the floor) took x-rays and were floored with how fast she was developing bone. It was happening really fast by Doc's account. So they put her in a second cast which went from her waist to her knees. She was in the second cast for about two months. After the second cast was removed, they were pretty much through, the hip had formed, and to Lovely Wife's and my untrained eyes, the x-rays looked the same from one hip to the other.

When Number Two Daughter came along a few years later, we took her to the Scottish Rite Hospital and they checked her out and found that she too had the dislocated hip. Her's was found at only about a week old, and her's wasn't as dramatically malformed as her sister's had been, so a few months in the Pavlik Harness was all Number Two Daughter had to suffer through. This photo is of NTD in her Pavlik Harness.

After they were released, we would return to the hospital with them for checkups on their hips every few months until we left Dallas and moved to the Atlanta, Georgia area in the summer of 1989.

Neither girl has had a hip problem since then.

I have to say a few words about Texas Scottish Rite Hospital For Children. I had never before, and certainly not since, been to a hospital where the people were so upbeat and positive and helpful. Hospitals have come a long way in care and simple common courtesy that didn't used to happen, but back in the mid and late 1980s the Scottish Rite Hospital was above anything I have ever seen as to quality personnel and treatment and facilities in a hospital. Not only was it the most incredible hospital and personnel I will ever see, they also handled the most horrible conditions and heartbreaking childhood orthopaedic problems you could imagine. Our girl's dislocated hips were easily the least threatening type of problem these people would see in a day's work. I'll always be grateful to them. Always.


Well, since I was on a roll scanning stuff, I thought I'd show y'all these two photos. In the first one Number One Daughter is "reading" to Number Two Daughter. NOD was at the age where we had read these books to her so many times that she would "read" them to NTD, even though she couldn't actually read yet. She would basically narrate the story, here it's about Baby Jesus, and...

...at the appropriate time, show the "readee" the pictures before she continued reading.

ADDED Saturday, September 3, 2011:
Thanks to all who have commented over the past few years. I still get occasional comments about this post and a few others on this blog. It lets me know that these few items struck a chord and that folks have had similar experiences. It's nice to hear from you, I still read new comments! Regards -- John M.

24 comments:

Hammer said...

That's amazing, I'm pleased to hear everything worked out alright.

It's not often that you hear good things about a hospital.

JAM said...

Hammer, they sure were good folks. We went into the deal with an "oh no, our girl has a problem" attitude and the people at the hospital and the severity of the kids around us with REAL problems quickly humbled us.

Babystepper said...

I loved reading your story. It makes this upcoming tonsillectomy for my almost 3-yr-old sound like a walk in the park. Thanks for sharing with us. You have some beautiful daughters!

Colleen said...

My daughter was born with what they called bi-lateral hip dysplasia (fancy for 2 dislocated hips). I just wanted to say that it is so great to be able to use blogs to share these stories... it was so hard to go through... but it helps so much to read about others who are going through, or went through, the same thing. My daughter will be 2 years old in June and has had "perfect hip" xrays since October. Thanks for sharing your daughters!

ruth's mommy said...

Hi! I live in Malaysia & my daughter Ruth (21 months) has just had an operation done to her right hip....she is in a blue fiberglass spica & was discharged last night. A closed reduction was attempted in early March & she was in pop for 4 weeks...then it was discovered that the bone had slipped out...so she had to go thru a long complicated surgery on Wednesday. Your blog has given me hope & raised my spirits as I try my best to cope with Ruth's condition. Right now, she is very frustrated at having her mobility restricted. We will need to go back to the hospital for more manipulation next week as the x ray taken yesterday after the op shows that the bone is still not in place. I am a Christian too and I am trying to bear this cross with graciousness...my parish priest is his good friday sermon said that christian joy is sadness overcome & I try to not over indulge in my sadness.

babyautumn said...

http://babyautumns.blogspot.com/

my daughter is also in a pavlik....luckily this condition never affected daughter 1 or daughter 2.....bizarre!!

We hope to take the harness off real soon...thanks for your blog ...its really helped me..

Anonymous said...

i am a 34 year old female. i was born with dislocated hips in both hips. it was not found until i was 15 months old so i had several surgeries and alot of traction. i walked for the first time when i was 4 1/2 and was very active all my life. i played basketball,softball, volleyball etc. i am now experiencing alot of pain in both hips caused from my left hip. arthritis is setting in earlier than what i had hoped and my mobility is not well at all. i do have a very healthy 9 year old girl and i am thankful for that. i had to have a c section because my hips would not expand to deliver her. after her birth is when i started having trouble with my hips. i am looking to have a hip replacement in the next few months and i am really down about it on account of my age. if anyone has any info on this please email me.
thanks,
angie
littlrbitvol@yahoo.com

Charlotte A. Weybright said...

I ran across your site as I was researching dislocated hips.

I was born in 1948 with both hips dislocated and the top of both hip shelves missing.

My mother suffered from severe mental illness (schizophrenia) from before my birth, so any problems I had weren't really noticed until I was 4 years old. Even then, it was my babysitter who noticed I walked with a waddle. At the age of 4, I underwent surgery on both knees because the doctors thought that was the problem.

I was in a body cast for about 10 months. When the cast was sawed off, the stitches had grown into the skin deeply. I still have large scars where the stitches had to be,literally, torn out.

The knee surgeries didn't work, so at the age of 5, they decided it was my hips. I went into surgery again. My left hip was forced back into the socket as much as possible. The right hip required an incision of about 6" in length (it is now about 10-12 inches due to my growth and its stretching). The hip was put into place with a pin, which will be with me until I die.

I was again put into a full-length body cast for another 10 months. When it was removed, I had to learn how to walk all over again. I then had a leg brace and crutches for about a year.

In my mid 20s, after the birth of my 5 boys, I began experiencing severe pain in my hips and right knee. At 31, I was told I needed hip replacements. I was devastated. That was in 1979, and the doctor told me he could give me 15 good years. When I asked what would happen after that, he told me I would be in a wheelchair. Because of the double problem of the severe arthritis and the missing hip shelves (which would require bone grafts), I would be able to have the surgeries done only once.

I said no thank you and never looked back. I will be 60 in February. I am in pain every day, and I am looking at three replacements - two hips and my right knee. My right knee began deteriorating about 10 years ago with rapid deterioration within the last 5 years.

I have had an active life though. I was able to have 5 sons, become an EMT and serve for 8 years, started college at 31 and graduated at 36, and then went on to law school and graduated from there at the age of 39.

I cannot complain about my life. But I understand the discouragement from the daily pain. I can't do a lot of physical things.

I love to travel but walking is agony for me. I just returned from a lobbying trip to DC, and I have to use my cane until I get over being sore from all the walking.

I am close to a decision about my hips and knee. I am forced to decide now because I do not want to be dependent on my sons and their families.

I am on my own, and I own an older home. I do a lot of my own work. I cannot imagine just giving up and sitting down to wait for the end of my life. I work full time, and I am involved in local politics and environmental issues.

I sometimes feel like I have no way out. But I know that every day technology and science improve the methods available to deal with my problems.

Sorry for the long story, but I rarely even discuss this with anyone anymore. It is my life, and I accept it. It was nice to run across a blog talking about the issue.

Anonymous said...

I'm a 35 year old female, when I was born i was born with congetial hip, but was not detected just a couple of months ago. I'm going through alot of pain and soon to have a total hip replacement at the age of 35.

Just a word of advice, if you have kids make sure you take them to an
orthpedic, so the child doesn't go through what I'm going through,
having osteoarthritis and burstsis.

Babs said...

I'm 44. I was 18 months old before it was discovered I had double dislocated hips. I was in a body cast for a year, and in hip braces for 3 years.

I have always been active.

When I was a child, my treating physician told me not to do any strenuous exercise, not to have children, and to find a sit-down job. Well, I learned how to roller skate, used to run 2 miles every day, played tennis, went rock climbing, had 2 children by c-section because my pelvis wouldn't expand, ended up being a waitress for 20 years, and then went into construction and farming for 5 years.

I'm in constant pain now, and arthritis is really setting in faster than I hoped it would. I have to walk with a cane most of the time now. I'm pigeon toed and knock-kneed, and that doesn't help much either, as the more pain my hips are in, the more my feet turn in.

I'll end up in a wheelchair because I can't afford the surgery, and the though of being dependent on a set of wheels scares the heck out of me, because I've always had an independent streak.

Anonymous said...

I am very happy to read the end result about your daughters hips. We are returning from hospital with our new born second son who has been diagonized after physical examination from the pediatric for hip dysplacia. We have an appointment with the pediatric ortho 2 days from now. We sincerly do hope like all parents do the extent of damage is less and it can be fixed permanently. I know its hard to see the little one go thru this. Your story has given our family the much needed hope at this hour and thanks for sharing.

Hope Reynolds said...

i am an 18 yr old female.. i found this while looking for a good pic of a double spica cast to show my .... mb future gf? why an old home vid of my diaper getting changed would be rly entertaining (it involved a hairdryer and slight of hand)

I had a brace and then a double spica cast to help cure it... didnt work as well as it should have...

i can chose to have the surgery again cause of the pain, but i dont want to be so restricted.

i have pain in both hips often and when it rains... the pressure drops so that i cant walk without tears in my eyes. when there isnt any pain... sometimes they just feel "weird" when the slide about in my sockets... almost like im double jointed... it only hurts then if they slide too farr...

you are so blessed to have 2 fixed girls!

tdfelkel said...

I was born without a hip socket and I am now 36 years old. When I was two years old I had a congenital dislocated hip operation at Duke Hospital in NC. There was a fifty percent chance I would walk with a limp by the time I was full grown. Anyway I played four years of college football at Gardner-Webb and right now I work on the hard concrete floor at The Home Depot in Burlington, NC. I have a 12 inch scar on the left side of my body. When I see the scar I am reminded of not the hurt I went through but the healer, Jesus.

Anonymous said...

I also was born without a hip socket. I am now 31 years old and I have NEVER had a problem with my hips. When I was approximately 6-8 months old they found it and I wore braces. Little metal braces. I even learned to walk with the them. Luckily it was caught early and I didn't have to have any surgery or anything. I have two fabulous hips.
Good Luck!

Wendy said...

I'm a 22 year old, and I was born with bilateral hip dysplasia. It was diagnosed when I was barely a couple of months old. Thanks to my mom's constant care (2-3 diapers and the brace) by the time I was a little over 1 year the doctors said I was fine.

When I was 10, I fractured my leg but after wearing a cast it healed. In the last couple of years, I have noticed that every once in a while my hip hurts and its hard to walk. As if my leg were to get "stuck." The pain usually goes away with in hours and at most I'll have it for one day.

A couple of days ago, my lower right leg hurts too much when I walk (my left also hurts but not as much). It feels like its the muscle but I just don't know. I guess what I would like to know is if anyone of you has experienced or is experiencing any symptoms in their early 20's?

Anonymous said...

My sister and myself were both born with this. My sister 11 months older then me had to be in a frog leg brace for 6 months and she was fine after that. Myself, however, is a different story. When I was born the ball had not formed at all. This was not found until I was over a year old. I have had 8 hip surgeries because of it. I have two long scars on my left hip. I had plates holding my hip together and when I was 8 years old the ball finally started to grow in. Then they had to do surgery on my right knee to stunt the growth on the right side because my legs were a inch and a half differnet in length. My growth plates closed before they could even out completly. They are now a half inch different and I only need a lift in my shoe to make me more comfortable. I had all of my surgeries done at Shriners Hospital in Salt Lake City. This is where Dr. Roach is now located. Although he did not do any of my surgeries I had the pleasure of meeting him in 2007. Shriners asked me to come back for a study that Dr. Roach was working on. He is the Chief of staff there now. Anyways they are trying to find out how the kids that had this problem were doing 10 years later. Dr. Roach seemed to be a very respectable Dr. and I liked him. I found it interesting that he worked on your daughters.
Not sure if you still read the replies on this but I'm glad your girls are doing well.

Anonymous said...

I am 27 and also was born with dislocatable hips. I wore frog braces for the first 8 months of my life for it. I started having severe pain in my hips at the age of 18. It has became very hard for me to work the past year. Any one on disability for this?

I am so glad for those of you who do not have any further problems. I wish you the best of luck and pray you continue without problems.

For those of you who do have problems, I sympothyze.

BELINDA said...

I too was born with Hip Displasure.My left hip was effected.It was found at 18 mths of age.I was walking!quite late.I had a closed reduction and wore a brace.The treatment was not sussessful for me.Ive had further bone operations.operations to keep me walking..im due for a hip replacement this year.My advise is treat this condition young and be watchful of it.

Tim Reed said...

What's the name of the Number One Daughter anyway? Looking from all the comments, it's unfortunate that people had to suffer and endure such ordeal. Hope your daughter is doing fine right now. It's not funny to be in a harness or braces all your life. Have you heard about depuy asr hip replacement recall?

AbbieKimer said...

Hi my name is Abbie
I am 15 years old.
I live on the coast of England.

I was born with CDH. And left the doctors baffled when they found it at 9 months old and i was already walking on it.
My mum only question about my hip when i was young because she saw that i had a limp and kept getting regular bruises on my left side. When she took me to the doctors she kept explaning the same thing but the doctors just kept sending me away telling my mum it was just part of me growing.
Little did they know that a month later they would be stringing me up in a cast for about 8 months.
When my mum found out i had been dealing with this, she burst out in tears and felt that it was all her fault.
But she knew that it was something that she would just have to get on with.
so for a year my mum was having to carry round a very chunky baby with a massive cast on.( i was born at 9lbs 6oz.)
And when she took me out she would get dirty looks, pointing fingers, and people actually saying to her "how could you brake your own babies legs like that?" which makes me cry, just thinking how horribly my mum was treated and how strong she was to deal with that sort of behaviour from people that dont even know what has happened.

But luckly for my mum she had help from her parents, and brillantly my grandad is a macanic so he does a lot of DIY, and managed to make me a little skate board which had a handle at the front, I used to wheel myself around just using my hands and feet, which was a funny sight.
After the cast (which i still have kept to this day) and all the x-rays and examinations, i managed to make a full recovery in the quickest time the doctors have ever seen.
I stopped all the x-rays and treatment by the time i was 8 and have lived a brilliant happy life.xx

It was lovely to read your story and it really made me think, that i am not the only person out there who have had CDH.
It must have been really hard for you for both of your daughters to of had it.
I wish all of you health and happyness for all the years that you have to come.....

Love from
Abbie
xxxxxx

JAM said...

Abbie, wow is all I can say. I'm sorry that your Mother had to face that. It was different for us, I'm glad to say.

People looked at us strange, but no one ever actually voiced those kinds of comments to us. It hurts to know that your Mom had to face such comments. I know they hurt, but I hope you can see that the people's comments to her, as if she had broken your legs, says a lot more about the mind-set of the person commenting than it does about your Mom or you.

Our daughters were big babies too; I think many dislocated hip babies are. Older daughter was 9 pounds, 11 ounces (4.4kg), whereas our younger daughter was 8 pounds, 8 ounces (3.8kg).

You said your mother noticed the problem when you began to walk, we noticed at 4 months with our oldest daughter when we'd sit down with her and hold her under her arms and hold her up as if she were standing. A child will naturally put their feet down, but she wouldn't put her left foot down but rarely. This kept happening and we mentioned it to the pediatrician at her next appointment.

The pediatrician ordered an x-ray, a basic, simple thing, and they showed us the x-ray. There was NO hip socket, nor was there a ball at the top of the leg bone, and the leg bone was just "out there" away from the hip.

It terrified us at first; parent's can't help but worry that the worst will happen, but our story ended up a really happy one.

We moved from the Shreveport, Louisiana area to the Dallas, Texas area just after finding out about her hip. We were blessed to be referred to the doctors at the Texas Scottish Rite Hospital for Crippled Children. They took great care of both girls in a positive and happy environment. That hospital dealt with (and still does) much, much more dire problems than dislocated hips. They always treated us and our girls as if we were a welcome break in the constant string of truly heartbreaking problems. Their attitude with us was one of "Yay! A problem we KNOW we can repair!"

I'm glad your Mom had great parents, we were a long way from the rest of our family, but that hospital and their friendly care made all the difference to us.

You said your Grandfather made a skateboard for you, that's awesome.

If you go back to this blog post and click on the pictures, there's one near the end where I'm on the floor with my oldest daughter. You'll notice she's in her waist-to-ankles cast in that photo. She would pull herself across the carpet, forearm and elbows over forearm and elbows and the knees of that cast got worn shiny and slick. She could move really fast like that and was incredibly strong because of it. Later they put her in a waist to knees cast and she learned to pull up on things like any child about to walk, but the cast wouldn't let her stand all the way.

All of this worked for her, and we found it in our younger daughter just after her birth...we had them x-ray her right away. She was in the Pavlik harnes for the first few months and developed her hip socket quickly and naturally, no cast was needed.

Anyway, than you for writing. I'm glad you are well, and hope you have as few problems as our girls have. They are 25 and 23 now, and you'd never get even a hint that either had the hip problems at babies.

I wish you and your family the best always.

-- John M.

Sixty7horse said...

Hi, my story is similar to Abby's. I am 49 years old and i was born without both hip sockets. My first surgery was at 2 years old. I lived in Pasadena, Texas at the time and was sent to John Sealy Hospital in Galveston, Texas. The doctor was amazing. I was the first girl they had ever seen with this problem. They used me as a teaching tool for students as this is a teaching hospital for doctors. My first surgery was on my left hip. I was told i would probably get arthritis and have to redo the surgery again between the ages of 14 and 20. I was in a body cast from my chest down to my feet. My mother sewed me shorts with snaps and i would have to wear a cloth diaper with plastic shorts. My second surgery was on my right hip in 1969 at the age of 7. I remember this one well. Another body cast for 6 months. I was in first grade. I had to be home schooled. My dad made me a large skateboard and i would push myself all around the house. This made my arms really strong and later i could beat the boys in arm wrestling. My parents were poor and the Scottish Rite group paid for my surgery. I can't tell you what a blessing these people were to my family. There are lots of things I could tell you about myself when I went through this but there is just not enough time at the moment to write it all down. But, i went through a lot of issues from walking with a limp to being teased horribly as a child. I wanted to comment on this particular blog to say that this was all a way of live for me and it shaped my life to who I am today. You who are going through this in today's medical advancements have a huge percentage of success rate for your childrens future. You are all very lucky to live in the times that this problem is no longer rare and the doctors are now very knowledgable. At 48 years old and last November, i just had my left hip replaced for the first time since 1965. Nobody knew my hip that was a trial hip surgery would last 46 years. My right hip that was done when I was in first grade is still going strong but I will have to replace it eventually. My new doctor told me when he does replace it, he can add some length to my right hip so I will not limp anymore. I have limped all of my life and it will be different to be like most people and not limp. Advances in medical science have come along way and I thank God for giving our doctors the knowledge they now have. I still live near Houston and we have the best doctors in the world. I enjoyed reading your story and it gave me the opportunity to tell mine. I have never blogged before and I don't normally comment on anyone elses but, this is a subject I know about. At the time I was diagnosed, it was only common in boys and dor only 1 hip. I was the first girl known about and it is both of my hips. I led a normal childhood except for mean kids but what doesn't kill you makes you stronger. I was told that I may have a hard time having children. I have 3 grown children and 3 grandkids. I had to have c-sections but not because of my hips. It wasnbecause they were all over 9 lbs. your children will grow up having normal lives and they probably won't go through what I did because od advancements in medicine. If they do need another surgery later, it is so advanced now there is nothing to worry about. It was a big deal for me to decide on surgery simply because of my memories of all the horrible surgeries back in the dark ages as I call them. This time I wasnin the hospital only 3 days instead of 6 weeks like before and I was walking on a walker the first day! We live in a wonderful time when advancement is a huge blessing to us all. I hope my story helps ease any feelings you may have on what your children may be going through now. It will get better and in a short period of time.

Brandie Terry said...

I was born with bilateral dislocated hips. It was in 1981. i was not first born.My mom continued to tell my pediatricians something was wrong. So the problem was discovered until I was a delayed walker at 18mo. Old. I was transferred to Duke Hospital in Raleigh, NC. There was a world conference there at that time and I too got one of the best orthopedic doctors in the world. He saw my case and wanted to experiment I guess. Anyhow, after a 7 hr surgery (my height n weight I was only supposed to be under 3 he's, they were going to fix one hip at a time, but decided to do both) they put me in a hard full body cast (like u get when u break an arm) . It went from my chest to toes. I stayed in that for months. Then transferred me to a plastic removable cast (kinda made me do a split, but stoped at my knees, so they dangled. Then finally after that, I got the experamental metal brace that wrapped around my thighs and ankles and had bars that held my legs in the shape of a "V"
so all went well the next 13 yrs or so... until I started experiencing hip pain.. I am concidered poor and have no ins so I was just placed on pain management. It's helps, bit unless I have money I will suffer until I'm 40 when ill b eligible for a hip replacement.
I wish your kids well, and if possible, try another method than pain management if they have pain in the future. It doesn't even work 100% and is addictive.. I have found alternative procedures I could have done, but it costs too much..

Unknown said...

My daughter had the same thing 34 yrs ago. Seems it's more prevalent in girls. That's what they told us anyway. My daughter was treated at the Childrens Hospital of Philadelphia (CHOP). She had the surgery~the traction and the harness. Her picture was taken for the recruiting material for the hospital~wish I was able to obtain some of that material from back then! If anyone reading this has any knowledge of how I would go about locating it or maybe you know someone who perhaps has some I'd be greatful! My email is ndnutt@gmail.com