Saturday, June 8, 2013

Hip Dysplasia: What is it?

I have been wanting to write this post for awhile.
There is so much to say... so much to try to explain about Hip Dysplasia, otherwise known as DDH.  (Developmental Dysplasia of the Hip)
It just so happens that JUNE is National Hip Awareness Month, so this is the perfect time to tell my friends and family a little bit more about Lucy's condition.
If you want to forward, re-post, share- whatever you want to do to get the word out there, PLEASE DO!  If I were to have known what these signs are, and what they mean, we may not be where we are today.

If I would have seen a poster like the ones pictured below.

If someone told me what an extra groin crease could be.

If someone told me to check leg lengths.

IF ONLY.

Now, some of you may wonder, 'isn't this the doctor's responsibility to know what to look for?'  My answer to you is YES.  My other comment is this:  No comment, because I can't/won't go there today.
We have much more to talk about that is going to help spread awareness...

Let's just say that an astounding number of pediatricians have missed DDH.  I know so many people on our group whose child has been walking around with a dislocated hip for YEARS.  YES... years!  It's a very silent disorder.  There isn't much known about it, yet the number of children with DDH is rising.

Most of my info is going to be taken from the IHDI. International Hip Dysplasia Institute.

I want to keep this post simple... I don't want to overwhelm you with too many gory details of what my child has been through.  (You can read through this entire blog and learn that.)  What I DO want is to tell you a few warning signs, and also a few tips on what NOT to do when you have a baby.


What causes Hip Dysplasia?

The exact cause(s) are not known. However it is widely believed that hip dysplasia is developmental. This is because hip dysplasia is known to develop around the time of birth, after birth, or even during childhood. This is also why hip dysplasia is often referred to as developmental dysplasia of the hip (DDH).
It is currently believed that infants are prone to hip dysplasia for the following reasons:

Hip dysplasia is approximately 30 times more likely when there is a family history.

Genetics plays a role, but is not a direct cause of hip dysplasia.
  • If a child has DDH, the risk of another child having it is 6% ( 1 in 17 )
  • If a parent has DDH, the risk of a child having it is 12% ( 1 in 8 )
  • If a parent and a child have DDH, the risk of a subsequent child having DDH is 36% ( 1 in 3 )
This means that up to 1 out of 10 newborn infants will have some hip instability if a parent or sibling already has hip dysplasia.

The baby’s womb position can increase pressure on the hips

The positioning of the baby in the womb can cause more pressure on the hip joints, stretching the ligaments. It’s thought that babies in a normal position in the womb have more stress on the left hip than on the right hip. This may be why the left hip tends to be more affected.
Babies in the breech position are more likely to have hip instability than babies in a normal womb position.
Normal womb position.  Not normally any risk for hip dysplasia / DDH
Normal womb position.
Breech womb position. A risk factor for hip dysplasia or DDH
Breech womb position.
Babies with fixed foot deformity or stiffness in the neck (torticollis) have slightly increased risk of hip dysplasia. This may partly be due to limited space in the womb from these deformities.
Also, around the time of birth, the mother makes hormones that allow the mother’s ligaments to become lax (stretch easier) so that the baby can pass through the birth canal.
Some infants may be more sensitive to these hormones than others, allowing for excessive ligament laxity in the baby. Girls usually have more ligament laxity than boys and girls are 4-5 times more likely to have hip dysplasia than boys.

The bones of an infants hip joint are much softer than an adult hip joint

It is easier for an infant’s hip to become misaligned (subluxate) or dislocate than an adult hip. This is because an infant hip socket is mostly soft, pliable, cartilage. Whereas an adult’s hip socket is hard bone.
Child
A baby's hip joint is mostly soft cartiledge (grey).
Illustration of an infant hip joint that’s still developing. The brown areas represent dense bone, where the grey areas represent soft, pliable cartiledge.
Adult
An adult hip joint is mostly hard bone (brown)
Illustration representing an adult hip joint. Note how the grey areas that were present in the infant joint are now completely replaced by hard bone.

Infant positioning during the first year of life

Cultures that keep infants’ hips extended on a cradleboard or papoose board have high rates of hip dysplasia in their children. Cultures that hold infants with the hips apart have very low rates of hip dysplasia. For this reason, swaddling with the hips extended during the first few months after birth should be avoided, and a hip-safe methodshould be used.
Babies carried in a sling on the back with hips spread is helpful against hip dysplasia.
Picture of a mom carrying her child in a back sling. Her babies hips remain spread (wrapped around her mother’s back) keeping the hips is a safe position.
Cradle boards and tight swaddling may make hip dysplasia worse.
Picture showing how a papoose board (or cradleboard) is used. The child’s legs are kept close together, extended, and tied down tightly by the wrap on the board.


When you are at your baby's well visits, your pediatrician will check the baby for a 'hip click.'  Here is a little more on that:

What is a “hip click”?

A “hip click” refers to an audible “click” or “pop” that occurs when a baby’s hips are being examined.
When an infant has a “hip click” it does not mean that a baby has hip dysplasia. While some infants that have a hip click will be diagnosed with hip dysplasia, there are babies with hip clicks that have normal hips.

Why would a baby with normal hips “click”?

There are many ligaments inside an infant’s hip joint that can make snapping or popping noises in certain positions for many different reasons as the baby develops.
A “hip click” is just one sign that hip dislocation may be present in an infant. Further examinations and tests will be needed to know why an infant’s hip is clicking.

So what does a “hip click” mean?

An infant that has a hip click should be monitored for hip dysplasia. It is important for babies to have regular hip examinations during the first year of life. There are documented cases where the hips were normal at birth, but became dislocated in the first few months of life as the baby developed physically.
Even with careful physical examination, hip dysplasia can be difficult to detect in newborn infants. Further tests such as ultrasounds and xrays are normally needed to make a diagnosis for hip dysplasia or to be sure the hip is normal.
Your pediatrician will also check for uneven leg lengths and asymmetrical creases.
Lucy had asymmetrical creases since the day she was born!  


Asymmetrical buttock creases can suggest hip dysplasia in infants but, like a hip click, an ultrasound or x-ray study will need to be done to determine whether the hips are normal or not.
Asymmetrical gluteal creases may be a sign of hip dysplasia in one hip. Thigh folds (seperate from gluteal folds) that are asymmetrical rarely indicate hip dysplasia unless they are associated with uneven gluteal creases.
Asymmetrical Gluteal Creases - Possible Sign of Hip Dysplasia
This baby's gluteal creases are uneven (note yellow lines). The right gluteal crease is lower than the left.

Asymmetrical thigh creases may be a sign of hip dysplasia.
This baby's gluteal creases are even (note the green lines). However this baby's thigh creases are uneven (note the yellow lines). The left thigh is smooth but the right thigh presents with two creases.
When a baby’s hip dislocation is present for several months, the hips gradually lose range of motion and the leg appears shorter because the hip has migrated upward.
Uneven thigh bone length may be a sign of hip dysplasia
This baby's right femur (thigh bone) appears to be lower(shorter) than the right.



If your pediatrician notices anything that could be a sign of DDH, you will be sent in for an ultrasound of the baby's hips.  The reason an ultrasound is done is because a baby under 6 months old hasn't developed bone yet... They are mostly still cartilage, which is not as easily seen on x-ray.  

If the hips are within a normal range for an infant, YAY!  All is well.

If not, you will be referred to an Orthopedic Surgeon.  

Most likely, if the child is under a few months of age, the ortho will suggest a Pavlick Harness.  What the harness does is frog the baby's legs out, which puts the hip in the best position to stimulate correct growth.  Usually this harness is worn for 6-12 weeks, full time.  This can be very hard to accpet for a new parent.  You dream of holding your baby tight.  You dream of seeing your baby kick their legs.  With the harness, that may be hard to do.  BUT... with the harness and early detection, the success rate is ASTOUNDING.  Over 90% of infants that were treated with the pavlick harness will have success and not require surgery.  I can't stress enough how early detection is KEY.  If you know someone who is having a baby... send them this blog.  PLEASE!  

Another way of treating DDH in younger infants is a brace.  Lucy had to wear her brace, but only AFTER a surgery.  You can read more about braces here.

SURGERY

The dreaded surgery... Well, actually- the surgery isn't as dreaded as the SPICA CAST is.  Trust me.  My baby was in a spica cast for 16 weeks.  If I ever see another cast again, I just may go insane.  It's hot.  It's uncomfortable for them.  They can't move.  It smells.  UGH.  Everything about it STINKS!
If you have questions about it, e-mail me!  I feel like I am a spica cast expert.  Unfortunately.


Here are the three types of surgery:

CLOSED REDUCTION  (No incision. Manipulation of the hip joint back into place.  Child is place in spica cast after for 12 weeks)

OPEN REDUCTION  (Incision is made and hip joint is 'cleaned out.'  Spica cast is applied.  Usually this requires an adductor tenotomy, which is where they lengthen/cut the adductor muscle to allow the hip joint to go back into the socket.)

OSTEOTOMY  (Where a bone is cut and reshaped.  This is done to either the femur or the pelvis.)

And whaddaya know.  Lucy's had ALL THREE!



What can you do to help your baby's hips grow and stay healthy??

- Don't swaddle tight!  Allow room for the baby's legs to be able to 'fan out' or frog out to the sides.
Here is a link on hip healthy swaddling

- NO FRONT FACING BABY CARRIERS!  Those are considered 'crotch danglers' and don't support the baby's hips AT ALL.  I get sick to my stomach when I see a baby hanging there.  VERY VERY bad for their hips.
I recommend the BOBA carrier or the ERGO carrier.

- NO SLINGS.  Yah, they may look cute, but they hold the baby's legs straight, just like a tight swaddle.

Here is a link on hip friendly baby car seats and other devices.



I could go on and on and on for days, weeks and months about hips!  Unfortunately, we are living it, every single day of our lives... I thank God that this is all we have to deal with right now, and that this is our cross to bear... little sweet Lucy doesn't really understand yet.

Our first line of defense is knowledge.  PUSH your pediatrician to refer you for an ultrasound if you feel like something isn't right.

Below are some pictures I have collected to show you a little more about DDH.

I hope this post out there helps, if even just ONE person!  I will have done 'my job' if one family doesn't have to go through what we have!






Notice the right hip (left on picture) doesn't have a socket that covers the femur?  That causes the femur to dislocate.



Lucy's knee heights were WAY off!  When our surgeon did this test my jaw dropped!  


I check both girl's knee heights EVERY day!


Lucy had an extra groin crease like this since the day she was born


This is what front facing baby carriers do!  VERY BAD!











RESOURCES and how you can help:

ONE HIP WORLD fundraising for the IHDI
Consider a tax deductible donation today

HOPE THE HIP HIPPO book for children and website


10 comments:

  1. Do you know how much I cringe when I see unsafe practices now. Hindsight is a wonderful thing, not that I used slings etc with Erin, but the actual knee checks and creases - she had them all. Why wasn't I educated about this about this? I am so angry about that.

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  2. Such a good post. My friend led me to your site - her daughter was in a pavlik harness and all three of my girls have had hip issues - 2 in pavlik harnesses and one discovered too late for that. The scary thing is, even with knees, creases etc checking out okay, my middle daughter had problems which were only picked up by x-ray. I have a few hip-related posts on my blog if you're interested :-)

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  3. This is a brilliant post!! My daugher went into spica cast at 3 months old & will be in it until she is 11 months old :-( Her hip problems were not detected until 10 weeks despite having a scan earlier due toher being breech. I have learnwd a lot from this post, thank you x

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  4. I found your post while looking for pictures of the braces I was placed in as an infant. Things may have changed significantly since 1980 when i was born, and I'm so glad you finding the resources you need. Just wanted to share this from the perspective of a 33 year old. I was released from the hospital in what my mom says was a "pillow brace" then put in a metal brace with stirrups for my legs. following six months of this when they failed to correct my hip dysplasia, I was placed in a spica cast from arm pits to toes with a bar between legs for three or four months. Fortunately I was spared surgery. The good news is that physically, you cannot tell that I was born with hip dysplasia. I'm an active cyclist, intense yoga fan, and have always been able to do all my peers can do. Aside from one season of cross country, I chose not to run distances for fear it might lead to an early hip replacement. Bad news is that as an adult, while I'm working on a doctorate myself, I've been in depth-oriented therapy because I'd been having unexplained, intense panic attacks. After a while, we've traced back these feelings that I could not explain to pre-verbal trauma from being in the body cast and being raised in a generation when everyone believed babies don't remember things before the age of 3 or 4. The lack of touch and soothing comfort that I would have received being on my mother's hip from 4-12 months, I was not physically close to anyone in any way (this is also based on stories I've talked with my mom and dad about). From seeing your dedication to your daughter I seriously doubt this will be a problem for her. But if there's any kind of early child psychologist specialist in town, might be worth talking to them if you have any concerns about all the restraint and frustration she may have experienced from the procedures and casting, etc. Please don't be scared by this...I just know you have actively sought so much information, I thought I'd share from the perspective of a little girl who had similar interventions as your daughter, 30+ years ago, and as a psychologist in training myself, I wish that everything that we have now to help resolve early childhood trauma had been accessible to me as a baby/child. I might have been able to work through any residual stuff as a child and not be spending so much time struggling through so much as an adult who's carried those traumas all through my life. Lucy may be a track star or Olympic figure skater thanks to all you have done for her and advocated for in her care!

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    1. Thank you SO much for this comment! Could I please ask you to email me? Email onehipworldkaren@gmail.com
      I would love to add you to our DDH site and have you share with us! Thanks so much!

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  5. Hi Karen,

    Sorry to leave this here but I couldn't find a contact option on your blog otherwise, and I wanted to get in touch! I stumbled across your blog while preparing to write about birth injuries and was touched by your story about Lucy and her hip dysplasia.

    I currently work for Asons Solicitors and am applying the finishing touches to a large piece of content this month which will centre on traumatic births and birth injury, detailing the sheer prevalence of birth complications and the wide variety of issues which can occur, as many mothers are unaware. The hope is that we can convince mothers that they are not alone in facing these problems, that support is out there, and also that, in those rare cases where a medical professional has let them down in their care, they may be legally entitled to financial recompense.

    As mother to a child who has suffered from DDH, I was wondering if you might be interested in contributing to this piece - perhaps with a quote about your experience and any advice you'd give to mothers in similar positions - which we'd then include within it, alongside a link to your blog? If this sounds like something which would be of interest, I can provide you with the draft and a space to make a comment. The resource will be published very soon, and will hopefully be a big success, with a graphics designer on hand to make infographics and the like!

    Please let me know your thoughts Karen. Your help would be massively appreciated, and I'm certain plenty of the mothers we work with would take great interest in your blog!

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    1. No thanks Richard. Good luck to you.
      Please- no more soliciting from my blog.

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  6. Thanks for sharing- my daughter will be having surgery in a few months... :(

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  7. My daughter just turn 2. She was born with hip dysplasia and had to wear a pavlik harness for about 8 months. She is doing much better. I will be taking her for her check up at the end of this month. She does have thigh creases and I just wonder if that will ever go away. Luckily her hip hasn't dislocated since her harness days. She is doing very well but with the last x-rays, the orthopaedic surgeon did say she her hip (femoral head) has some more growing to do.

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