Patient Stories

Isabelle’s Story

A Long, Hard Road to a Positive Outcome

We hope our story will help other parents who have children with dislocated hips, especially those that are found after walking age and are difficult to treat. After our daughter started walking, we noticed that she was limping and her left leg looked shorter. We took her to the pediatrician and a dislocated left hip was diagnosed at the age of 13 months.

Our lives immediately changed and haven’t been the same since then. We saw an orthopedic surgeon who sent us to a pediatric orthopedic surgeon who had lots of experience with dislocated hips in children. My husband is in the military and we have another child so that made problems seem even worse. However, we both have a positive attitude towards life and that probably helped us as much as anything.

Of course we wondered how our darling daughter could have a dislocated hip that was not diagnosed earlier. We learned that this happens in almost 10% of dislocated hips even though our daughter had good medical care and regular examinations as an infant. There are definitely cases that come out of the socket after the age of six months. Even countries that have had comprehensive screening for decades are still reporting late cases of dislocation. It didn’t help us to blame anyone and it wouldn’t help our daughter recover so we turned our attention to getting her well as soon as possible. That turned out to be a lot harder than we ever imagined.

Brace Wear

We wanted to avoid surgery. A new method was tried called the Hoffman-Daimler method. It’s similar to a Pavlik Harness and successful treatment had been found in Greece. She tolerated it well and didn’t seem to mind but it was hard to get her clothes off and on. Also, it kept her from walking and that was pretty tough on a 13 month old who couldn’t understand what was happening. After six weeks the doctor said that this wasn’t working and she would need the standard treatment of closed reduction and cast treatment. The thought of four months in a cast was frightening but we had no other choice since bracing had not worked.

Note from the IHDI:
When a brace does not correct a dislocated hip, the next treatment options are a closed reduction or surgery involving an open reduction, possibly together with osteotomy. In a closed reduction, the child is put to sleep, and the doctor manipulates the hip joint to get the ball at the top of the thigh bone inside the hip socket. In an open reduction, the doctor surgically opens the hip socket. In an osteotomy, the doctor cuts bone to realign the hip socket and/or the thigh bone. In some cases the doctor tries for a closed reduction, which is less invasive, and if that doesn’t work, will then do surgery. Parents often prefer this approach as well because if the closed reduction works, then surgery is not needed.

Attempted Closed Reduction

At the age of 15 months, our little daughter had general anesthesia for a closed reduction. We expected everything to be fine. It was pretty depressing when the doctor told us that the hip wouldn’t go into the socket because the ligaments were too tight and something was in the socket that kept the hip out.

We were resigned to open reduction surgery even though we had hoped to avoid that. At least the cast would only be on for six weeks after surgery even though she would need a brace for another six weeks. We thought the end was in sight and surgery was scheduled a couple of months down the road. We had some concerns that the bone in her thigh needed to be shortened and the pelvis needed to be cut. That sounded like a whole lot of surgery for a toddler.

Open Reduction and Dega Osteotomy Followed by a Cast and Brace Wear

When she was 18 months old, the date for the surgery had arrived. We were nervous, especially because nothing we had tried up to then had worked. Why we didn’t do the surgery first seemed puzzling but hindsight is 20-20 and we were told that most children didn’t need surgery. We were even more optimistic that this would succeed when we learned that our doctor had some visitors who wanted to watch the surgery and learn how to do it better from watching our surgeon do the operation.

The surgery took about four hours, but we were confident that our little girl was in good hands. After surgery, the doctor said that the hip did have something inside that kept the hip out of the socket. That had been removed, the bones had been rearranged, and the hip was now in the socket. We saw the before and after x-rays and there was a huge difference.

Note from the IHDI:
This child had an open reduction and Dega osteotomy. With a Dega osteotomy, a cut is made in the hip socket, and the bone is tilted downward and out to the side to create more lateral coverage in the hip socket. Pins hold the joint in place as the new bone grows into the place where the cut was made. The child also wears a cast to keep the hip aligned and to provide support.

We were surprised at how fast our daughter recovered. The body cast was a lot more difficult for us than it was for her. We did what we could to keep her occupied and the six weeks passed even though every day seemed like a week all by itself.

She was scared when the cast was removed and her skin looked dry and crusty. There weren’t any sores like we’d been warned, but it took a good bath and some skin lotion to get her to stop scratching. We kept her in a brace for the six weeks although we were allowed to take her out for up to six hours a day. We went back to the doctor two weeks after the cast was removed. Everything looked fine on the x-rays and we were happy to have the big surgery behind us. She started pulling up and walking pretty soon afterwards even in the brace.

We went back for our regular appointments, but four months after her surgery our hopes were crushed when we were told that the hip seemed to be coming out of the socket again. How could that happen? We couldn’t imagine, but we were told that the hip was not completely dislocated so maybe a brace would help keep the hip in the socket until it became more stable. She was fitted for an Atlanta Brace that let her walk, but kept the hips spread so that the hip might go back into the socket.

After another three months of that brace, the hip was farther out of the socket than it had been just four months after surgery. Our doctor had discussed this with other doctors and the only thing to do was to repeat the surgery. He said he would do something different and make the hip stay in this time. Maybe we should have gone somewhere else, but we knew that we had a good doctor with lots of experience so we stuck with him. By now our daughter had spent a year trying to get her hip fixed. She was two years and three months old.

Note from the IHDI:
After the hip is surgically realigned in a child, the hip joint typically grows into a more stable shape as the bones develop. This process of bone growth is called remodeling. If the joint is not stable, and the hip goes out of position, the benefit of remodeling is lost. A Dega osteotomy corrects hip dysplasia in many cases, but unfortunately, in this situation the hip did not stabilize, and the child needed to undergo a second surgery.

Salter Osteotomy

The second surgery went about the same as the first surgery except we knew what to expect and so did our daughter. Fortunately, she was still too young to understand but it was hard on us. This time the surgeon said he “was more aggressive” with the bones above and below the hip joint. The joint itself was tightened even more and the cast stayed on for 8 weeks.

She seemed to recover just as well as she had after the first surgery except that the hip stayed in the joint. She limped for almost a year because that leg had been shortened twice and she was pretty weak. Gradually, she regained her strength. A year after her second surgery everything seemed to be fine but she had to have another operation to take out the metal pins, plates, and screws. That went without a hitch and she was only in the hospital overnight. No cast was needed.

Note from the IHDI:
For this surgery, the doctor used a different technique to further correct the shape of the hip socket. He performed a Salter osteotomy. This surgery rotates the whole hip socket on top of the femoral head, allowing more room inside the hip socket. During surgery, the doctor was able to create more room inside the hip socket for the ball, so that it was deeper inside the socket. After this surgery, the socket reshaped and widened to fit the head as the child grew.

She continued to improve and we enrolled her in Karate because we thought that would help her with flexibility, balance and strength. Our precious daughter is now five years old and three years since her last major surgery. She loves karate and the instructors love her. She seems to have all her hip movement. The lengths of her legs have completely recovered like her doctor said it would. Fortunately she doesn’t remember most of what went on to get her hip back in the joint and keep it there. We’ll never forget, but we’ll also remember how great it is to have a healthy child who can do everything like other children her age.

Isabelle is back practicing Karate