Patient Stories

Kailyn’s Story

Kailyn was born 2 weeks late following a semi-uneventful pregnancy. I had some minor problems with pre-eclampsia, and as a result was placed on bed rest 4 weeks prior to delivery. Kailyn was also breech and seemed to be underweight, but this was explained away as an erroneously calculated date of conception. She did turn at about 38 weeks, but she was folded in half, with her feet up by her head. My OB/GYN believed this would work itself out during delivery.

Long story short, my water broke around 9:30 on a Sunday morning and following 12 hours of no progression, Kailyn was delivered by emergency c-section. Come to find out, her placenta had a small rupture for quite some time, explaining her low birth weight of 5 pounds 15 ounces. I thought the worst was behind us… boy was I wrong!

Our wonderful pediatrician was the first to become concerned about hip dysplasia because Kailyn had been folded in half, and I had problems with my hips during the pregnancy. These problems had been caused by an overproduction of the hormone that makes the hips relax for delivery. After an examination 8 hours following birth, the pediatrician confirmed that Kailyn had “loose hips” and fitted her for a Pavlik harness. That would be the first time we were introduced to bilateral hip dysplasia. She then made an appointment for us with an orthopedic surgeon.

We saw the orthopedic surgeon once a month for 5 months. He saw no progress in the development of the sockets, and Kailyn’s hips were both easily dislocatable. Following an arthrogram and a failed attempt at a closed reduction, he referred us to a pediatric orthopedic surgeon at the large children’s hospital in our area. Kailyn was 5 months old.

We arrived at our appointment with the ped. ortho. feeling defeated and scared. As first-time parents we had enough on our shoulders without hip dysplasia, but here we were! The doctor looked over Kailyn’s file and films and said the words we feared most… open reduction. Our first ortho. had mentioned this possibility, but it was in the context that it was rarely necessary. Surgery was scheduled for the following week, and we had no idea what to expect.

Kailyn was in surgery for almost 4 hours. When the ped. ortho. came out to speak with us, he seemed very pleased with how the surgery went. He took us back to the recovery room to see her, and we were shocked at how she looked. Our tiny little girl was completely covered from upper chest to her toes with this huge pink cast. I guess we hadn’t really known what to expect since we had not seen a child in a spica before. It was definitely not what we had expected!

We spent 2 nights in the hospital before Kailyn was released. She was hard to carry (there was no bar between her legs to hold onto), and we had no carseat that she would fit into. We drove the 2 ½ hours home with her strapped laying down in the back seat of our car. What an adventure!

Kailyn would spend the next 13 weeks in the spica. She had one cast change after the first 7 weeks, but other than that everything was smooth sailing. I was so surprised at how happy she was even though she couldn’t roll over or crawl like other babies were able to. We obtained a Spelcast carseat from a local home health agency, so we tried to take her out as much as possible just so she would have some outside stimulation. And I went back to work, so she got to spend time with other children at daycare. She was a very popular girl!

After Kailyn’s spica was removed at age 9 months, she was fitted for a rhino cruiser to be worn at night. We continued to see the ped. ortho. once a month for x-rays to check for progress in the growth of the hip sockets. Before the open reduction, Kailyn’s acetabular indexes were around 40. Following the removal of the spica, her indexes were 36 on the left and 34 on the right. However, that was the last progress we would see.

At Kailyn’s 18 month check-up (9 months following removal of spica), we were told that pelvic and possibly femoral osteotomies would be necessary on both hips. There had been no growth since her first surgery, and it was time to take the next step. Here we go again!

The ped. ortho. gave us a month to get our work schedules sorted out for the surgery. This would be a bigger ordeal than the open reduction, and I would have to be away from work for quite some time. We also needed time to prepare our then wild and free 18 month old for life in “confinement”. There would have to be another spica, and Kailyn would go from weighing 25 pounds to around 35 pounds. We had a lot to prepare for.

The initial plan given to us by the ortho. was to get inside and look at the hips to decide on whether the femoral osteotomy was necessary. Thirty minutes into the surgery, a nurse let us know that the doctor believed only the pelvic osteotomies were necessary. He would work on her left side first, close her up, and we would come back in 3 weeks to do the right side. They said it would be about 4 hours before the end of surgery.

To our surprise, about 3 hours later, the doctor came out to tell us that not only was he done with the left hip, but no hardware was necessary to hold the femur in place. The bone grafts were all the support they needed. He would go ahead and work on the right side that same day.

Another 3 hours passed and we were so excited when the nurse called us to come to the recovery room. Kailyn was very swollen and completely out of it, but both sides were done with no hardware. That meant no more surgeries for us, right? Wrong!

We spent nearly 5 days in the hospital this time. Kailyn had to have a blood transfusion, and it took quite awhile for her caudal to wear off. Once her hemoglobin levels were normal, we were sent home. I thought she would be a bubbly little girl just like after her open reduction. Well, she was having no part of that, and pretty well crabbed and cried non-stop for a week.

We went in to see the ortho. one week post-op. The x-rays told a horrible story… Kailyn’s left femur had dislocated from the socket and the bone graft was lying flat in the socket. Back to surgery we go.

Kailyn was scheduled for emergency surgery 2 days later. This time hardware was used to hold the left femur in place, but the right hip was holding up beautifully. It was good and bad news all in one, but we would still have to have another surgery to remove the hardware. We spent 4 days in the hospital this time, another blood transfusion, and we were sent home.

Kailyn was in the spica for 9 weeks before it was removed. She was now 22 months old. The ortho. opted to leave the hardware in the left hip “just in case”. She would have it removed 6 weeks later with no problems… not even a night in the hospital!

We are now 3 months past the hardware removal. At her recent check-up, Kailyn’s indexes were in the low 20’s on both sides, and the ortho. said those words we all long to hear, “See you in a year.” It’s been the longest 2 years of my life, but one thing is for certain, it was worth every minute of it to now see Kailyn run and jump and roll around just like a “normal” kid.

One year later she had her next check-up. We were sent to x-ray as usual, and with nervousness my husband and I waited for the news from the doctor. He and his assisting physician both entered the room with smiles from ear to ear. Kailyn’s hips were absolutely perfect in every way. Both femurs had wonderful coverage and were completely in socket. She will now be able to do anything she wants to – dance class, soccer, even skating. She’s a perfectly normal little 3-year-old. In fact, the doctor was so impressed with her progress that we will only need to see him every 2 years until Kailyn is about 13-years-old. I can finally breathe a little easier and let Kailyn have the freedom I wish she could have always had. Like the old cliché – we lived happily ever after!