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Bronwen was born prematurely on April 6, 1999. She came home with us in late May, and on her second visit to her pediatrician since coming home, he said that he thought her right hip was dislocated and referred us to a pediatric orthopedic surgeon. Her due date had been June 11, 1999, and this appointment was June 25, 1999, so she "should" have been about 2 weeks old at the time we found out about it, but really was 2 1/2 months old.

Her risk factors were first born girl, breech, & low amniotic fluid. I am not all together certain if these factors completely apply to her, however, since it is not unusual at all for babies to be breech at 30 weeks gestation. I don't think anyone knows about when these factors are the most significant as far as the baby's development before birth.

We saw the orthopedic doctor in early July and she was put into a Pavlik Harness. She'd had an ultrasound done on her hip as well. My reaction to this was mostly that I couldn't believe that after her problems with prematurity, that she should have some other, unrelated problem. I was pleased that there was an 80% success rate with the harness, and pretty confident that we'd have it on for 12 weeks and have the whole mess behind us.

How wrong I was!

She only wore the harness for 6 weeks. At her second check up, the doctor said her hip had gotten worse in that he could no longer get it to go back into the socket at all. He said we'd have an x-ray on her hip closer to the time when she should have been five or six months old, as that's when the bones are just starting to calcify. He felt that this would be the best time for surgery.

We had an x-ray sometime in late October, close to 5 months adjusted age. She had her first closed reduction surgery on November 10, 1999. The doctor had gone into the surgery not knowing whether he would do an open or closed reduction, but he said that since the hip went right into the socket with no resistance, that a closed reduction was all that was needed.

A week later we took Bronwen in for an x-ray to check her hip. It had slipped out of the socket again. The cast was removed right then. I was pretty upset and completely unprepared for this possibility (I didn't even have pants for her to wear!) We rescheduled surgery for December 1 and she had her second closed reduction. This time the hip stayed in place.

We were supposed to have the cast on for 12 weeks, with a cast change at 6 weeks. But when 6 weeks rolled around, she had a head cold and ear infection, so we postponed it for another week. Then in early February, her feet started to swell up. We took her in to the doctor and he put slits up the sides of her legs. The swelling went down initially, but within a couple days it went back up again. I took her in again and the cast was removed on Feb. 10, 2000. She was in the cast for 10 weeks. The doctor said her x-ray looked perfect and scheduled us to be seen again in 3 months.

I was pretty confident that her hip had been "fixed." Her leg length discrepancy had disappeared, as had her uneven leg creases. She was happy and starting to move around more, though she still could not bear weight on her legs. So I was really shocked when the doctor told us her hip had slipped slightly and was not perfectly in the socket anymore. We were fitted for a brace that she was to wear during naps and at night.

Three months later we saw the doctor again. He felt it looked a little bit better, so we were to continue with the brace while sleeping. At this same time, however, we had to change our insurance coverage. Initially, her doctor agreed to see her free of charge, as long as we had her x-rays taken through her pediatrician. But at Bronwen's 18 month physical, her pediatrician noticed that her spine was not straight. I felt that if we were going to have continuing orthopedic problems in addition to the hip, that we should switch to an orthopedic doctor that our insurance would pay for.

Both of her doctors came highly recommended. We did see her first doctor one last time. He felt that her hip was not perfect, and maybe she would need surgery when older, like age 3. But he wasn't recommending surgery right then. We went to see her new doctor. He felt she needed immediate surgery: an open reduction and possible pelvic osteotomy. This really threw me; I really trusted our first doctor, but wanted to do the best thing for Bronwen. We ended up deciding that since her problem wasn't going to go away, that it was probably best to deal with it now, and save a year or so of poor bone growth due to it not being in the correct position.

So Bronwen had surgery again on November 17, 2000. Just over a year from her first closed reduction. She had both an open reduction and pelvic osteotomy and wore a spica cast for 8 long weeks. At Bronwen's 6 week check up after the cast had been removed, the doctor said her hip was healing wonderfully and the head of the femur was much closer in size to the left, unaffected one. The acetabulum looks the same, but he said there has not been enough time to see much change there. He recommended that we keep her in the nighttime brace as long as she was tolerating it.

While all these things were going on with Bronwen's hip, she was having additional problems. We had been told in October 1999 that she likely had low muscle tone, but that it was mild. I didn't think much of that at the time. But after her first cast was removed and she was developing so slowly with gross motor skills, I started to wonder more about it. I thought it was very strange that she could not bear weight on her legs. She was also having some problems with eating highly textured foods. She was evaluated and we started receiving physical therapy to help with these issues.

I also learned somewhere along the line that she had hypermobile joints. That means her joints can move much more than they are supposed to. I talked to her doctor about it and he agreed that this probably had a very negative impact on the treatment of her hip. I was pleased that she had an osteotomy, as that moved her bones to help hold her hip in; I don't think her connective tissues were helping her one bit.

After we found out she had scoliosis as well, I decided all this was a little bit too much and we saw a geneticist. He called her "a puzzle," and ended up diagnosing her with Hypermobility Syndrome due to an unknown connective tissue disorder. He could find no reason that her problems were related to one another, and deemed them coincidental. So all of her diagnoses are: Developmental Dysplasia of the Hip, Hypermobility Syndrome (due to a connective tissue disorder), Scoliosis, Hypotonia (low muscle tone), and premature birth at 30.5 weeks gestation.

Her scoliosis has worsened since it was first discovered. She was fitted for a back brace and started wearing it on April 4, 2001. She wears it all the time except for bathing or swimming.

I'm hopeful that her hip issues are behind us now that she's had the osteotomy. The hip pins were removed in March 2001. The incision from her osteotomy (about 6 inches long) has generally disappeared, except for where they opened her up again to remove the pins.

May 2002 update
Bronwen was just seen at the Shriners Hospital for Children, mainly for her scoliosis. But since her CHD is a major part of her history, this was discussed as well. The doctors there were impressed with how well the surgeon performed her osteotomy operation, and said her hips looked wonderful. Her acetabular index is down to 15 degrees, on both sides. The femoral head is growing very well. We do not anticipate any problems with her hips in the future. It feels really good to say that; I think this is the first time that I have done so and really believed it.

See pictures of Bronwen.


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