Jack’s Hip Dysplasia

During his first pediatrician visit after being released from the NICU, Jack’s doctor though he felt the slightest click in his hip.  We were sent for an ultrasound of his hips.  Before I was even to the car after that ultrasound I received a phone call that I needed to immediately book an appointment for Jack with a pediatric orthopedist.  I still remember not really fully understanding the gravity of the situation.  Even as I waited in the waiting room for that appointment I had no expectations as to what was going to happen.  It is amazing how quickly I went from blissfully unaware to overwhelmed.  During that appointment Jack was fitted with a brace that he would have to wear 24 hours a day for weeks.  No taking it off for diaper changes or baths.  I wanted to cry.  After all Jack had been though it was crushing to hear that there was yet something else wrong.  Also after I had waited so long to have my baby home I could no longer dress him in the cute clothes that had been waiting.  I could no longer cuddle his tiny body to mine without feeling a brace on his body.  In reading stories from moms going thought this same thing now it is amazing how they feel the same.  I wish I had known then that it was normal and okay to have those feelings.

The brace however did not last as long as the doctor was originally predicting it would have to be worn.  A few weeks later Jack was in the hospital with a virus.  It was decided that his immediate treatment was more important than keeping the brace on and it was removed.  It was also discovered that the brace wasn’t having the impact that it was hoped it would.  After he was released from the hospital the orthopedist said Jack would need to have surgery.  The surgery was tentatively scheduled for almost 5 months later.  However when we got to that point the doctor felt it was best to wait a few more months to give Jack time to grow a little more.  If you’ve ever been in a situation where you are planning something major an preparing not only mentally, but carefully planning your days off then you know how it throws you for a loop when those plans get changed last minute.

When surgery day finally came it started off with a bang – or more appropriately a siren and red and blue lights.  As I was packing for the hospital stay I discovered that the in-home babysitter who had been watching Jack for the past few months had been stealing from us.  An after midnight run to a 24 hour store to buy a new front door lock made an already restless night that much more bothersome.  I am not sure what angered me more the fact that someone I trusted with my child had stolen from me or the fact that I was worrying about reporting it to the police while my child was in surgery.

During the surgery the doctor first tried a closed reduction of Jack’s right hip.  “A closed reduction does not require a surgeon to cut into the hip socket. The surgeon then manipulates the hip externally to bring the head of the femur into the correct position in the hip socket (acetabulum).  The surgeon stabilizes the hip by applying a spica cast.”  After the cast was put on, Jack was taken to recovery and they began waking him up.  It is so hard to see your 9 month old child waking up from anesthesia.  Not knowing if he is in pain, but quite certain he doesn’t understand what is going on.  After a little while, Jack was taken for an MRI of his hip.  It showed that the hip was not in place.  This meant he would have to go in right away for an open reduction.  “During an open reduction, the surgeon opens the hip capsule and surgically positions the ball of the femur into the correct position in the acetabulum. After sewing up the hip, the surgeon stabilizes the hip by applying a spica cast.”  Basically they have to go in and move the tendons, muscles, etc. to get the hip in the correct position.  I cannot tell you how nerve wracking it is to have your child go under anesthesia not once, but twice in a short period of time; to have to worry about him and the possibility that the tiny artery in his hip could be severed and lead to blood loss or the loss of his leg.  Jack was in a spica cast for seven weeks.  The cast went from his waist down to his ankles. 

I can still remember sitting in his hospital that night and being overwhelmed with everything that happened, including the cast.  Looking back now, it’s amazing to me how no one took the time to explain things at any point.  Jack was just put into a brace, then had surgery and was now in a cast on half of his body and no one took a few minutes to explain what hip dysplasia was, what might happen, what the steps to correcting it were, and what would happen along the way if each step failed to correct the issue.  Most everything I know about hip dysplasia I had to find on my own.  There are a few websites with bare bones information, there were no books on the subject, and Facebook didn’t have many groups, let alone groups for parents going through this.  Most every bit of information on hip dysplasia was related to dogs.

Jack went through the spica cast and brace like a champ.  Just before his first birthday he was out of the cast and only in the brace at night.  Just before he turned 2 he finally took his first steps on his own.  Things finally started looking like they were falling into place.  And then they weren’t.  Just before he was 3 the doctor said she felt Jack’s hip wasn’t progressing as it should.  While he could still walk and run, there were internal issues that would lead to an unhealthy hip if they weren’t corrected.  Her advice was to put him back into a brace at night.  At almost 3, it was near impossible to get him into the brace.  We that battle was won it was a struggle to get him to fall asleep.  When he finally did it was a night of restlessness and a tiny voice begging for his mommy to help him (take off the brace).

Living in the Chicago area I am very fortunate to have two well respected hospitals nearby - Shriners Children’s’ Hospital and Lurie Children’s Hospital.  I sent in an application to Shriners for Jack to be seen by one of their doctors and he was accepted.  During that visit the doctor opined that Jack needed pelvic and femoral osteotomies.  This was the first time a doctor was recommending a second surgery, spica cast and brace.  It being a big decision I sought out a second opinion at Lurie.  The doctor at Lurie recommended waiting six more months.  He also said that if surgery was to be needed he would likely only recommend a femoral osteotomy.  With two such different opinions it is difficult to know which is the right one to chose.  My greatest fear was that I would pick what was behind Door #2 and curse Jack to a life of hip pain.  Ultimately I chose to go with Lurie and their doctors.  I made this decision for two reasons.  One reason was because my healthcare coverage at the time was excellent.  I knew that if Jack would have to have surgery I had a manageable deductible and all services related to the surgery would be covered.  If I chose to go with Shiriners, my insurance company would not reimburse them any of the cost.  I felt that if we dropped out of treatment, maybe another child would be allowed in and receive treatment their family couldn’t afford.  The other reason I chose Lurie is because the doctor explained the Shriners approach like this – there are three ways to go about correcting Jack’s hip dysplasia.  A doctor can do a femoral osteotomy or a pelvic osteotomy or both.  Doing both is kind of like swinging for the fences.  If you do one at a time there is a chance you will have to go back and do the other, but if you do them both at the same time you’ve covered your bases.

Six months later Jack went for another x-ray and the doctor said things were starting to develop, but wanted to wait another six months and if things weren’t were they needed to be then he would have to do surgery.  As I started to think about where that would put us in the next year (February 2013) and then after finding out changes were coming to my insurance I asked the doctor to move that appointment up so that if surgery would be needed it could be done in the winter and in 2012 when my deductible had been met, the procedure would be covered and I still had time off at work.  Also waiting until 2013 would mean Jack would likely be in a cast for his birthday and I couldn’t do that to him.  If I waited until after his birthday it would be summer and again I couldn’t let him be put in a cast while all his friends were running around outside.

Well, that appointment had a surprising result when the doctor said things were starting to look good.  He was no longer recommending surgery and would just want to see Jack in another six months.  So, six months went by and I actually started to feel confident that surgery was not in Jack’s future.  I should have known better than to be that confident.  When he saw Jack in May of this year he was no longer happy with how things are looking with Jack’s hip.  Jack will need a femoral osteotomy.  “A femoral osteotomy is performed when there is adequate coverage of the femur but still the femur can move with the possibility of dislocation. The surgeon begins by opening the hip capsule. The femur is cut all the way across just slightly below the ball area. The surgeon then rotates the top of the femur slightly around towards the acetabulum. The femur is then put back together with a plate and screws. Lastly a hip spica cast is placed on the child. The plate and screws are removed in a separate operation at a later date. The femoral osteotomy rotates the top of the femur around to fit better into the acetabulum while the bottom of the leg remains unchanged.”

So again I thought carefully about when would be best to do this procedure and have Jack in a cast.  Jack is not only in daycare, but also in preschool through our school district.  Being in a cast for around 4 weeks is going to require a bit more from both school and daycare.  I wanted to let Jack get through and enjoy summer so I chose to have the procedure in winter.  So here we are.  Jack will be having surgery next month – the week before Thanksgiving.  The logistics of how things are going to work are a bit overwhelming.  How Jack will get to school on the bus, how the teachers will help him get around, how he will have to be helped when he needs to go to the bathroom, and most importantly how an almost 5 year old will handle being in a lower body cast all remain to be figured out.  All of that is pretty important, but what I am trying most not to think about it what happens if this procedure doesn’t correct Jack’s hip?