Sunday, October 11, 2009


Six months ago today, the on-call pediatrician picked up on Olivia's hip dysplasia. When an ultrasound confirmed it, we were thrown into this crazy hip world. Since being diagnosed, Olivia has endured quite a bit -- a harness, a surgery, a spica cast and now this brace! She's handled everything with smiles, and whether or not it's related, she has become quite a mellow, happy-go-lucky kid. We are thankful every day for such a perfect being. This Wednesday, we will enter a new chapter in the book; the county is coming out to do a motor evaluation to determine if Olivia needs physical therapy. There is a pretty good chance she will since she has yet to reach any motor milestones. Frank and I are both okay with this. It's important for our sanity that we focus on the positive. Plus, seeing and hearing of all the children with far worse conditions does help put things in perspective. And, it will be pretty awesome when she finally does sit up or roll over without any help.

We've had to do a lot of self-education on developmental hip dysplasia (DDH). Unfortunately, most of this comes from other parents. Our orthopedic pediatrician, Dr. Richard Bowen at NeMour's Clinic (DuPont Hospital, DE) gave us an "informational" introduction to his book on DDH... the target audience was surgeons. I read the whole thing -- some parts twice. I googled a lot of words but now know what an acetabular is. As it turns out, Olivia's hip were pretty severely dislocated. On a scale of 1 - 5, they were a 4 according to Dr. B. The first course of treatment, the Pavlick Harness, works pretty well for most children, but not our Livie! To be fair, the right hip did great; the left, not so much. So, Dr. B. did an open-reduction surgical procedure where he clipped her tendon to make the hip more flexible in order to set it in place. She was then put in a spica cast. Over the next 11+ weeks, she went through 2 casts. We got pretty used to them, but honestly, who gets "used" to a baby in a cast. There was much rejoicing when the thing finally came off.

Through it all, we've met some pretty amazing people -- others whose children have DDH, some severe, some not. Our support system grows with each new encounter, which helps tremendously. Tell another mom you spent 20 minutes changing a poop diaper, and you get a look of shock or horror. Tell a mom of a kid with DDH in a spica cast the same thing, and you get a kindred spirit. We've learned so much from these people.

There is no medical advice I can give to parents with a new diagnosis. I am not a medical professional and can only tell our story in the hopes that it will help ease anxiety. I can, however, share what we've learned and what helped us along the road.

1. Ask questions. Lots of questions. You are your child's voice and advocate. Talk to doctors, nurses, other parents, everyone. We knew the county provided free early intervention services, but we never thought about our insurance company. We learned that through another mom.

2. See your child, not the diagnosis. This is very hard when your child just happens to be in a contraption (especially if your child is 5 days old), but I promise, when you stop seeing what is wrong, it gets easier. Don't let this define who your child is.

3. Make friends. Don't be afraid to start up conversations with other parents in the waiting area. These are the people that will laugh with you when your child smells like poop all the time. Promise.

4. Remember, treatment for DDH has fantastic success rates. We hear stories all the time from parents whose children needed treatment as infants and are now running and jumping sans problem with others their age.

5. Your child will never remember this but you will never forget it. Keep it light. The time passes faster when you do.

1 comment:

  1. you and frank are doing a great job - here's hoping you find the best (and most fun) physical therapist in the tri-state region :)


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