Tuesday, September 3, 2013

Kate's DDH Diagnosis

This is our sweet daughter, Kate.
And those are the last pictures take of her before she was diagnosed with Developmental Dysplasia of the Hip (DDH).

A "hip click" is found
Exactly a week ago, our little family of three made the hour-long trip to Orlando.  We planned on taking Kate to Downtown Disney after a doctor's appointment...which we thought would go really well.

You see, at Kate's 2-month-old check-up with her pediatrician, all was seeming fine.  We were told the heart murmur she was born with was completely gone...which was fantastic!  Although people live with heart murmurs all the time, we'd still prefer our little girl's heart be normal and healthy.  Then came words that would be the start of our journey...even though we didn't know it yet.

"Oh.  She has a hip click," said her pediatrician.  A what?  She then proceeded to tell us it was more like a hip "clunk," which basically meant her joint made noise, meaning we needed to find out why.  She sent us on our merry way that day with an appointment for an x-ray and ultrasound on her hip the next day.

Long story short, we got her x-ray and ultrasound.  Kate's pediatrician got the reports back from the radiologist, and she called us to tell us while it was hard to tell if they were normal or it it was Kate's positioning, she wanted us to see a pediatric orthopedist to get his "blessing," before we decided if everything was normal.  She told us his office would call us to make an appointment, but that there was no rush because everything appeared to be ok.

Getting checked out
The first thing Kate's doctor, Dr. Wu, asked us as he walked in the door was, "Do you know why you're here?"  I replied, "Her doctor found a 'hip click' at her 2-month-old check-up."  He then proceeded to dig a little bit to see how much we knew about what that was.  I was kind of embarrassed about how little I knew about it.  I mean, everything "looked pretty good" on her tests, so why would I go "Google" to freak myself out, right?

Then he pulled out Kate's x-rays...the same ones that the radiologist said appeared normal.  These are those same x-rays.

When he set them down, I immediately asked, "There's something wrong, isn't there?  They're not the same."  Dr. Wu then explained to us that Kate's left hip (seen on the right) is naturally dislocated.  And as the top x-ray shows, her body had already started to create a new socket.  He explained to us that Kate had DDH.  He explained that it is most common in first-born females (like Kate), and that it's pretty much unknown what causes the condition.  I later learned that the first-born part is because babies are tighter in-utero than succedent babies, and the female part because we have looser ligaments...which put together with pregnant mama's hormone relaxin can be very loose sometimes.  Dr. Wu explained that untreated, Kate would walk with a limp and have a lot of pain later in life.

Treatment for DDH
Dr. Wu wasted no time telling us that Kate would need to wear a "brace," known as the Pavlik Harness.  This is the least invasive form of treatment for hip dysplasia.  He explained that while he is hopeful the brace will work for her, a cast or surgery may be needed if it doesn't.

According to the doctor, Kate will need to wear her harness 24/7 for about 3.5-4 months, if it works.  She is not allowed to take it off unless it's an emergency.  This meant no bathing, swimming, etc.  Images of her splashing (a new love) in her bathtub and an upcoming beach trip flooded my mind, and I lost it.

After that, the appointment is all a big blur.  For reasons I couldn't fully understand, I was absolutely devastated.  I cried as my baby wailed at the top of her lungs as he adjusted her harness on her little body.  He assured me that the condition is painless and that she wasn't crying out of pain, but at the time, that did little to make me feel better.

So, we scheduled the first of our weekly appointments and left.  We headed home, not to Downtown Disney World, with our sweet 11-week-old baby girl in a corrective brace.

Coping and Adjusting
Over the next several days, to say I was a wreck would be pretty accurate.  And the worst part was the fact that I couldn't understand why.  I couldn't put into words what I was feeling; all I knew was that I felt extremely sad.  I felt sad for my baby girl and sad for us as parents.  I was sad because Kate was just learning to splash the water in the baths that she loved.  I was said because -I- would miss watching her enjoy her baths.  I was sad because I couldn't hold my baby the same way I used to.  I was sad because breastfeeding just got nearly impossible...and we all know it's not easy to begin with.  I was sad because I didn't know how to dress her in ways that wouldn't interfere with her harness.  I was sad that she wouldn't be able to kick her legs the same way.  I was sad that I wouldn't be able to play with my baby in the same way.  I was sad because I couldn't bicycle her little legs to help her pass painful gas bubbles.  I was sad because she couldn't stretch out her little body anymore, which is seriously one of her favorite things to do.  I was sad because she seemed sad.  I was sad because I felt that in some way my body or my genes failed her.  I was sad because she can't swim at the beach in a few weeks...or even get in the water.  I was sad that her brace will prevent or slow the usual milestones a baby reaches between 2 and 6 months old.  I was sad because I realized all the cute clothes she'll never wear.  And seriously...that's JUST to name a few.

You see, I knew (and know) some of those reasons for sadness were pretty lame.  I knew some of them were no big deal.  I knew that they are all sacrifices worth making to help Kate develop properly.  And I knew parents of children with much, much more serious problems and actual illnesses would think I was ridiculous.  They'd probably say things like, "you're lucky that's the only condition your child has."  And what made it even worse is that I knew they'd be right.  But I was still sad, despite logic.

It wasn't until reading another blogger discuss her feelings about her child's hip dysplasia diagnosis that I began to come to terms and understand my feelings.  The fact of the matter is, I -know- this is not a life or death situation, but it HAS changed everything we do with Kate.  Diapering, dressing, bathing (or lack there of), feeding...it's all very difficult.  And the things that aren't difficult...like holding her, playing with her, etc., are still very different.  And it's overwhelming.  Going to the doctor every week awaiting news of her progress (or not) is hard.  Waiting to see if she'll need a cast or surgery...is hard.  And as the other blogger pointed out, I struggled with feelings of guilt for feeling this way because I do know it could be a lot worse.  Because if there's one thing I don't want anyone to misunderstand, it's that we are so very, very grateful for Kate's health.  As she explained, it's just a "mourning" process.  And she's absolutely right.  I had to mourn the loss of normalcy, simpleness, some of our favorite things, and the way of life we had become accustomed to with our baby girl.  I know that Kate will bathe again (a celebration that will be!).  I know she'll swim.  I know I'll be able to cuddle her harness-free one day.  But I'd be lying if I didn't say I'll miss those things terribly over the next 4 months or so!

However, after MANY prayers this week asking God to please show me how to "let go and let Him," I'm feeling stronger every day.  Brian and I have begun to thank God in advance for the healing we believe he'll bring to Kate.  We can still use your continued prayers for our strength and hers.  We thank the Lord that this is harder on us than it is on Kate!  Babies are resilient, and she won't even remember this short time in her life.

I'll leave you with a few pictures of this first week in her harness.  We have our first follow-up ultrasound and doctor's visit tomorrow.  I'll let you guys know how it goes!

1 comment:

  1. This made me cry so much!! I soo get your sadness. Its different, but it reminds me of the sadness I felt and still feel over my rough delivery of Zane and having to be unconscious for it. We didn't get to hear his first cry or see his first breath. I didn't get to see my husband hold his son for the first time, he didn't get to cut the cord. I didn't get to see him all covered in goop. Its things that don't matter in the long run, but they can make you sad just the same. Kate's got some great parents and I know you two will see her, and each other, through this.