Meghan’s Story

Meghan was diagnosed with CDH within moments of birth. She had the problem in both hips – the left less severe (described as a click) and the right worse (described as a clunk). She was first born, female and breech (three of four higher risk factors). She was frank breech for the last 3 months of pregnancy and delivered by c-section at 39 weeks. We brought her home from the hospital in a Pavlik harness and the doctor gave us 90% success rate.

After a few weeks, Meghan stopped moving her right leg and the harness was removed for 2 weeks until she started again. This went back and forth for a couple of months until the Ortho said it was time to move to the next procedure. The left hip was fixed but the right one was still completely dislocated. A hip spica was applied when she was 4 mos. old and she wore it for 10 weeks with a change at 5 weeks. Again, Doc gave us 90% success rate.

Unfortunately, closed reduction failed and she underwent open reduction at around 9 months. It was discovered that there was no abnormality in her hip structure but the socket had filled with fatty tissue and had to be cleaned out. After three days in the hospital, we went home with a new spica and a success rate of 95%! The Ortho was very positive that this would work – his words were that there was no reason for it to fail.

Five weeks later, we went back to the hospital for what we thought was a routine cast change only to find that the hip was still dislocated. We were devasted.

Since Meghan had spent 4 out of 10 months in a spica or harness and could not even crawl, our Ortho wanted to postpone further treatment until she was 1 1/2 years old and potentially walking. Our last hope of repairing the problem is with a procedure called Femoral Osteotomy.

Meghan’s osteotomy lasted 3.5 hours but did not require a blood transfusion (as originally anticipated). Her thigh bone was cut completely in half and the top part (with the ball) was rotated until there was a good fit into the socket. They took a slice from the bone and put it at the top of the socket – this stimulates growth and helps to prevent the ball from slipping out of place. They then reattached the femur (with a pin inside/plate & screws outside) so that the leg was pointed correctly. There was an approx. 5″ incision made across her hip and another approx. 6″ down her thigh. The doctor said everything looked good but he seemed somewhat reserved considering our past failures. Meghan was in severe pain for 2 days and was having some breathing problems from putting a tube in her throat during surgery. It was really tough to see her suffering so much. Within 2 days, she started drinking on her own so they removed the catheter and later the IV. The next day she was acting like her old self again although she didn’t have an appetite. She continued to take pain medication for 1 week.

This cast was shaped different than before and car seats were not an option so we were loaned a funny looking harness from Easter Seals. It straps the child flat on the seat laying down. Since transporting her was so difficult and the cast was so awkward, we elected not to put her back in daycare until after the cast came off. My hubby and I alternated time off from work for the next six weeks to care for her.

Meghan had her cast changed after 4 weeks and was put back in a cast for three more weeks (vs. the expected two). The new cast was significantly different – only her right leg was casted with a 4″ ring of cast around her hips. Her left leg was completely exposed and there was no stabilization bar. It really presented a challenge since all of our gear was designed for the hip spica.

After 3 more weeks, Meghan had her cast removed and everything looked great! The doc said the hip was in place and he saw some normal development/improvement since the last x-ray.

Two weeks later, Meghan went back for more x-rays and was fitted for a brace which she had to wear at night only. The brace was two velcro cuffs with a bar between them and it looked a little like the Pavlik harness. She wore this at night for two months.

At Meghan’s six months checkup post fem. osteotomy she was been deemed “fixed”. She’ll have to be monitored until puberty and still has a plate to be removed but the prognosis is great and we don’t have to see the doctor for a whole year! Her leg is still turned out a bit and slightly shorter than the other but she runs and plays like every other kid her age. The angle and leg length discrepancies will improve with time and should be gone in around 2 years. Each day her mobility and gait improve – most people don’t even notice her hip now. Right now, we’re not even facing therapy and no current prospects of surgery.

2002 Update:

Meghan had the surgery to remove her hardware . She was taken back for surgery at 8:45am and we were on the way home by 1:45pm. She was heavily medicated that day but was on ibuprofen only by the next morning. The only problem we had was trying to keep her calm. Meghan’s doc said that we had to be extremely careful for the first 10 days (especially in the first 4). We were suppose to keep Meghan as calm as possible with no running or jumping. He said that he didn’t think a cast was necessary and normal activity was okay. His biggest concern was jumping — he said a jolt to the leg could cause a fracture but that within 10 days the holes would heal enough that we wouldn’t need to worry. We weren’t able to keep her calm since she wasn’t in any pain but luckily nothing happened. We went for her post op and her x-rays showed that all the screw holes in the bone were filled in and weren’t visible at all.

Meghan went for her annual check up: 2 years post femoral osteotomy and 1 year post hardware removal. She had a standing x-ray, physical exam and was observed walking and climbing stairs. On all counts, the news was great. Her doctor was pleased that her leg angle is almost normal, indexes are completely normal and leg length discrepancy has decreased (although its still around ½ to ¾”). We were surprised at how different her right hip (the problem one) looks from her left but the doc and intern said it looked great. Her doctor said that it will take years for the hip to look normal on x-ray but that she was progressing beautifully. At this point, he does not foresee any necessary treatment in the future but will continue to monitor her with annual checkups until at least 8 – 10 years old.

What we thought would take 8 weeks to fix ended up taking several years and multiple surgeries but we are finally there. Meghan’s was the most difficult case her doc had seen in 20 years of practice but even her problem was able to be corrected and she’s now a normal, happy little girl.

2005 update

It’s been 4 years since Meghan had a femoral osteotomy. She’s been monitored every 3 – 6 months since then, mostly uneventfully. We were always told that the ball of the femur didn’t sit perfectly in the socket but that it was good enough. We started seeing Dr. S around 2 years ago when her original doc and only surgeon (Dr. J) retired and we got what we thought was a false scare. The doc said that the coverage was getting worse but it turned out that the xray wasn’t taken right (we found out several months later).

At her check up 6 mos. ago, the doc said the same thing — not great but good enough and no further surgery appeared to be needed. When we came back 6 mos. later, we got the news that the coverage was getting worse and if we did nothing, the prognosis wasn’t good (arthritis in her teens and hip replacement early twenties). Dr. A was recommending a pelvic osteotomy before she turns 8. We were devastated as Meghan appears to be fine (no limp, runs a lot, no pain) but were holding out hope that the doc was wrong. I started researching docs in Wash., DC for another opinion but took her to a new doc (Dr. K) here in Richmond, VA in the meantime. After a thorough exam and several xrays, his diagnosis & prognosis were the same but he recommended a femoral osteotomy instead. He committed to send Meghan’s xrays to San Diego for another opinion. He did consult with doctors in San Antonio and doctors at Dupont (one of the other places we were considering taking her). He said that they all unanimously agreed that:

  • pelvic osteotomy would most likely cause more harm than good by making the hip stiff (a pelvic is what the first doc recommended)
  • if anything should be done, it should be a repeated femoral osteotomy
  • before we do anything, Meghan should have an arthrogram to better determine how badly the femoral head is seated and if surgery is necessary or would even help.

When I told him we scheduled a consult with Dr. B at a Children’s Hospital in DC, he encouraged me to go to that appt. first (before the arthrogram). He said if I didn’t hear the same thing from there, I should continue with consultations until I felt comfortable with what I’m hearing. Even though the arthrogram isn’t that invasive (dye injected into the hip than xrayed), Meghan would have to have anesthesia and she’s considered high risk so he wanted me to be sure. So far, I like Dr. K’s approach and the attention his giving Meghan’s case so at least I’ve found a new local doc. Unfortunately, the news from Dr. B wasn’t good either.

Even though not recommending surgery isn’t necessarily a good thing since the long term prognosis doesn’t change, I’d much rather make that decision than to put her through anything else that may not work. We aren’t really any better off than we were before but I’m at least starting to get the info. we need to make a decision.

I have told her current doc that I will not make a decision on further treatment for at least 6 months. I need to see another xray that shows the hip getting worse before I believe that it really is. He agreed with this approach.

We are very reluctant to approve any more procedures unless we can be convinced that something will work without doing more harm. All of the docs that have seen her agree that it may be too late and it’s a very frustrating guessing game at this point.

2005 update

It’s been six months since surgery was recommend and Meghan’s xray showed no change or possibly a little better. With Dr. K’s agreement, we decided we would not pursue further surgery unless the hip degraded or Meghan started developing stiffness or pain. We were finally in agreement that no action was preferred since the surgery could make things worse (and put Meghan through trauma that might not even help). The plan was to monitor her every 6 months for changes.

2007 update

Since our decision (against most medical advice) not to pursue surgery. Meghan’s xrays have been the same or possible a slight bit better.

That news finally changed with her recent visit. The hip position is possibly a little better but the ball of the femur is now rounding out to fit better in the socket. Her doctor is so confident that we made the right decision and she looks good enough, we have finally graduated to annual visits!

I know things could change in the future but it is very gratifying to know we made the right decision 2 years ago, even if it was against 5 doctor’s advise.

Meghan is almost 9 now and is a smart, active, rambunctious child. She just finished a Tae Kwon Do class so I don’t believe seems being limited by much. We know there will be something’s in life she can’t do (track) but for now, she’s a pain-free happy little girl with two very happy parents!




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2 Notes

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  1. Mom says:

    Hi! We have a similar story/problem and are also deciding against further surgery 4 years after open reduction. How is your daughter now? Could you update your post if possible?

  2. Jodi@prairiekuchen says:

    would love an update

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