Dear parent of a child born with hip dysplasia,

When my daughter was born, she was diagnosed with hip dysplasia. I had no idea what it was because no one in our family ever had it. Her pediatrician said he would keep an eye on it and check her hips at two months. At that appointment, he forgot to check her hips and I ran after him in the hallway and asked, "Hey, what about her hips? Aren't you going to check them?" He said "Oh yeah." He checked and they were still "loose" or "clunky" and asked us to get an ultrasound done. We had it done at a local hospital and it was miserable. The ultrasound technician obviously was not used to doing a hip ultrasound on a 2-month-old who was screaming and squirming. It took two hours to get that ultrasound done and it was a nightmare, with my baby throwing up all over the bed at one point from crying so much.

We then went to a local orthopaedic surgeon who said her right leg was shallow and her left leg was totally fine, and he fitted her in a pink harness at that first appointment. As we drove home, our baby girl started screaming and when we got home I took her diaper off to change it thinking maybe that was why she was crying so much. What I saw scared the heck out of me... she was blue from the waist down. Apparently he put the harness on too tight and too high up.

That afternoon I decided I was no longer having my daughter seen by an orthopaedic surgeon who also saw adults. I wanted a pediatric specialist, someone who saw only kids and knew more about hip dysplasia. That is when I made the appointment at Children's National. While it was a longer drive for us than our local doctor (about two hours in rush hour traffic), it was well worth the trip. Children's National had its own ultrasound technician re-do the ultrasound and found that the left leg was NOT fine like the first doctor said, but was completely dislocated. And the right one was a bit shallow, but better off than the left leg. Needless to say, we were shocked that the first, local doctor completely missed the dislocated left leg and was only going to treat the right.

As soon as we started the hip treatments at Children's National, we felt at peace knowing that she was finally getting the right care. While they began as our "second opinion," we switched everything over to them to handle all the treatments.

Having a baby with hip dysplasia is scary at first. I recall bringing my 3-month-old from the hospital after her first closed reduction and in her spica cast and thinking, "My poor baby, how will she handle three months in a body cast like this? How will I handle it?" But with the help of family and friends, and of course Children's National who got me in touch with another mom whose daughter had hip dysplasia, we figured it out as we went. I also joined the Yahoo Hip Babies Group which provided invaluable support and tips on things like diapering a baby in a spica cast, keeping them entertained, etc.

My daughter, unfortunately was an extreme case because the first closed reduction didn’t work. It fixed her right hip, but her left would fall out of the socket as soon as the casts came off; so she had an open reduction at 9-months-old and spica cast until the day before she was 12-months-old. She handled it so well! She even went to daycare during this time and did great!

Her left hip finally remained in the socket, but was still shallow and the night-time Rhino cruiser brace wasn't helping like it should have, so she had a pelvic osteotomy just a few months before she turned three. I felt confident having Children's National do the surgery because Jeffrey Hanway, MD, really waited as long as he could to see if the hip would improve on its own with the Rhino brace. As he put it, my daughter's hip was just being "really stubborn," and we held off on another surgery as long as we could. Dr. Hanway was wonderful, explaining everything he was going to do for the surgery, including answering my many questions over e-mail. You would think that my daughter would be scared of doctor's with all these hip surgeries and spica casts, but she isn't! She even told us after our last appointment that; "I like Dr. Hanway, he's nice and it was fun when he made my legs play bicycle." (Bicycle is what they call it when the doctor takes the child's legs while she/he is lying on the table and moves them like they are riding a bicycle, to check for range of motion, etc.). When we got home, she asked to "play bicycle" like we did with Dr. Hanway!

This is a long letter, but if you get nothing else from this story, it's that you should trust your instinct if something is wrong with your child, and get them checked out by the most knowledgeable and experienced person you can. There is no reason we should be taking our children to doctors who see adults. Children are totally different than adults and should be seen by doctors who specialize in pediatric care. And in my opinion, there are no better experts than those at Children's National Medical Center. I thank God every day that we live close enough to be able to take our daughter there and have all her hip dysplasia treatment by experienced specialists we trust.


A hip baby mother, Helena



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