Josie’s Journey with Hip Dysplasia

I knew from before Josie was 2 weeks old that she was going to be our second Hippy Babe.  Esther also inherited my Dickie Hips so I knew what to look out for.  I can not pin point the first time I noticed, but Josie’s thigh creases were not even.  I knew what this meant and I was fairly prepared when the health nurse confirmed at her 2 week check that her left hip felt stiff (just as her big sisters had 18 months earlier, only that time I was not prepared, not at all).

Developmental Dysplasic Hips, DDH, is the medical term.  I tend to say Dicky Hips or Clicky Hips when explaining it to people.  I don’t at all mind talking about it but it’s just one of those terms that many people have never heard and will need an explanation of anyway.  It basically means that the hips socket has not developed as it should have, sometimes causing the Femur to sit in the wrong position in the socket, be dislocated or ‘click’ when moved.  There are varrying degrees and luckily my girls have both had relatively mild cases with shallow hip sockets but stable joints, that is, the Femur does not dislocate from the socket.

These images from the International Hip Institute show the range of severity that can occur.

human hip joint as it should appear  Subluxation when the ball is not aligned properly with the socket. A mild form of hip dysplasia    Low Dislocation when the ball is just outside of the socket. A more serious form of hip dysplasia.    High dislocation - the ball is completely removed from the hip socket. A severe form of hip dysplasia.

Standard procedure here is to do an ultrasound scan at 6 weeks old if a baby has a high risk or is suspected of having DDH.  We were booked in for this scan from birth as a precaution but I was not willing to wait all that time doing nothing when I knew that a  Pavlik Harness  would be very effective at such a young age when babies are growing so rapidly.

I got an appointment to see the Orthopeidic Surgeon when Josie would be 4 weeks old.  Try as I did, Radiography would not budge, 6 weeks for the ultrasound it was.

In the mean time I used double cloth nappies on Josie day and night to hold her legs out in a position similar to the Pavlik Harness.  This is no longer used as an official form of treatment but I could not wait around and do nothing.  Who knows if it helped but it made me feel better.

All of a sudden Josie was 4 weeks old and the Orthopeadic Surgeon confirmed she had DDH.  I explained my fight with Radiography to get an ultrasound scan done earlier, he agreed with me, lead us up to Radiography and explained that Joise would be having an Ultrasound…NOW!  I was quietly chuffed that a Surgeon was agreeing with me and fighting me case.  The ultrasound confirmed what we already knew and by the end of that outing Josie was fitted with a Pavlik Harness for 23 hours a day for the next 8 weeks.

As I write this now, 6months from the harness first being fitted I don’t remember it being too much of an issue.  Sleeping wasn’t fantastic but she was generally happy.  I found the worst part for me was that she wasn’t all nice a squishy anymore.  All those straps made her feel big, bulky and stiff.

The weeks passed quickly but by the end I was well and truly sick of the harness and looking forward to it coming off.  The ultrasound date came and I was delighted by a following appointment with the Orthopedic Surgeon where we were told her hips now looked normal. Harness off.  Squishy baby back.  Delight!

‘Yes her hips are fine now’ I would explain to people when they asked.  This is what we believed to be true.

At some stage between between 4 and 6 months I noticed her thigh creases were not even again.  I am kicking myself now but I didn’t think anything of it.  The Doctor had never mentioned that she may need further treatment or that the issue could come back.  Her hips are not going to ‘un-grow’ I thought!  I flippantly mentioned the creases to the Health Nurse at her 6 month check, still not thinking much of it.  And then she checked Josie’s hips.  ‘Yep, this one’ pointing to the left hip, ‘You need to get this one looked at, I can feel a click’.  I burst into tears. How could this happen?  What do you mean?  Why was I never told this could happen?  This must be bad.  I had a million thoughts going through my head.  I called our Orthopedic surgeon as soon as we got home and demanded an appointment as soon as possible.  The next day, thank goodness we didn’t have to wait.

I hardly got a minute of sleep that night and the next day the Ortho confirmed that he could feel a click but didn’t think it was much to worry about.  Wow, I thought.  He sent us up for X-rays to be sure.  The Radiographer didn’t think there was much to worry about either, I was feeling so relieved!  Then back to the Ortho to review the X-ray.  He explained that her hips were not perfect but that he would review when she turned one and treat then if necessary.  Umm.  Sorry.  No way!  I was not waiting until she was one and wanting to move around to put a damn brace on her.  I asked if she would benefit from wearing a brace even just part time.  We agreed she would wear a Rhino Brace for day time only and he would review in 6 (6!!!!) months.

So the Rhino Brace went on and she honestly wasn’t fussed by it at all.  Clever little lady!

I couldn’t help thinking that 6 months was just too long to wait and see.  If it hadn’t worked in that time then what?  Surgery?  And as relieved as I was that the brace wasn’t on at night, it just didn’t feel quite right.  Too good to be true I guess you could say.

I organised a second opinion.

We had that opointment on Wednesday.  This Doctor was brilliant.  Reassuring yet cautious and thorough.  He confirmed my suspicions that the brace should be on at night time and that 6 months was too long to wait before reviewing.  He is going to review in 2 months time, (when the brace has been on for 3 months) and was confident that the brace would work, he wasn’t sure on a time frame though.  He also wants to X-ray and review Esther, who had her brace off at 6 months at which time we were told there was no need to review.  Turns out there is every need to review for several years after treatment of DDH as the hips can sometimes not maintain their growth and development after treatment is ceased.  Esther will have an X-ray next week.  I feel sick thinking about the possibility that she may need further treatment.  We will keep our fingers crossed that she is fine and cross that bridge when we come to it.

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