Monday, April 7, 2014

Our Dr. Segal

Hi friends,

This post is one that I didn't think I would have to write.  One that I was hoping never to write.
Our beloved Dr. Lee Segal, Lucy's ortho surgeon, has left Phoenix Children's Hospital.  He is headed to the University of Wisconsin in Madison.
My first response was NO!!!!!!!!!!!!  No way could this happen!  Then, I calmed down a little, and began to realize that God sent Dr. Segal to us when we needed him most.  Dr. Segal was Lucy's angel.  I have no doubt! 

For those who don't remember, let me tell you how we found him.
We had our first meeting with an ortho at PCH. (Not Dr. S) He seemed like a great doctor, but wasn't a great match for us.  I was determined to get a 2nd, 3rd, 4th opinion, whatever it took.  I went home, did some research online, and saw Dr. Segal's picture and bio.  With the 'Director of Orthopedics' title, who wouldn't want him?!  I mean, that must mean he's the best, right?!  So I called.  My heart sank when the receptionist said, 'he doesn't have any appointments until May.'  (It was January.)  Great… I was really hoping to see him.  
She did give me the name of another ortho, and said he could see me in the Mesa clinic location of PCH on an upcoming Wednesday.  
We anticipated this appointment, hoping and praying that this doctor would be the right one.  If this doctor wasn't going to work, we would be heading to California for some other opinions.  Heck- I would have flown to the ends of the earth to find the right surgeon.

We get to the PCH clinic, and upon check-in, the receptionist told us, 'that doctor isn't here today.  He doesn't work here on Wednesdays.'  For those of you who know me, you know that I would have not made a mistake on the appointment day and time.  I even had a voicemail reminder call!  I got teary eyed, and told my husband, 'let's just leave.  This isn't meant to be… we need to start checking out other hospitals and doctors…'  That may not sound reasonable to some, but to very confused and scared parents, overreaction is a daily occurrence.  
Sure enough, the receptionist came to us as we were headed out the door and said, 'Wait.  We have one ortho here today, and he is overbooked.  He just got here, so let me see if he could see you.'  She came back after a few minutes and said, 'yes.  Come on back, he will be right in.'

A few minutes later, the door opened, and it was Dr. Segal.  I recognized his photo from the profiles page on the hospital's website.  I said, 'you're the doctor I have wanted all along.'  He looked at me and said, 'why?!  Why would you want me?!'  and laughed.  I knew right then, this is our doctor.  He was so normal.
He spent close to an hour with us.  He explained things.  He did an exam on Lucy. He got down on Lucy's level and would play with her.  He treated her like a little girl, not just his first patient of the day. He comforted us.  He gave us a 'road map' of what we can expect in the future.  
We left the appointment with our beautiful 12 month old daughter, and I told Aaron, 'As much as I don't want to do this, this is the right doctor.'  He agreed.  It was a strange feeling we had leaving that appointment...strange in a good way.  Like a big, warm feeling of comfort is the only way I can explain it.  
  
Since that day, Dr. Segal has never disappointed us.  

Who knew that when we showed up for an appointment on the wrong day, that we would be so lucky to get him?!  
Prayer, my friends! Prayer.  We prayed and prayed and spent so many nights crying our eyes out, hoping that we would find some comfort in this awful diagnosis.  I remember saying, 'God, please. Just give us a sign.  Give us a sign that Lucy will be okay.'  Dr. Segal was our sign. 
Dr. Segal entered our lives with everything we could ask for, and more.  Expertise, love, kindness, understanding, professionalism… I could go on for days.  He walked this journey with us, as a member of our family, not just a doctor.  He gave my Lucy the opportunity to have a normal life.  
I will never forget when we were just about to send Lucy off with him for her first surgery… Feb. 16, 2012.  I was laying with her in the pre-op bed, and just holding her, and studying her little legs and tummy and thinking about how I am going to miss those things so much!  To say I was upset doesn't quite cover it.  I was a total wreck.  Dr. S said to us in his calm tone, 'Guys.  I will take care of her like she is my own.'  Can you imagine what that meant to us?  Confused, scared, anxious parents in a pre-surgery room with their little baby about to be put in a body cast. 
It meant the world.  It meant the world because we knew that he meant it.
He is our partner through this, not just our doctor.


Having him be Lucy's doctor is probably one of the best things that has happened to us.  Not only did we get the best doctor, we have a member of our family for life. (His beautiful wife, too!)  Truly, the kindest and most caring people I have ever met.

So, for those of you who are in the Wisconsin area and needing an ortho, don't hesitate. You will write me and thank me for the referral. :)
For those who are doctors and need to learn from someone, don't wait.  He will lead by example, and anyone who becomes half the doctor he is, consider yourself lucky.
For those who want the best, Dr. Segal is the one.  He WILL take care of your child like he/she is his own.  

Be sure to tell him, 'Lucy says hi.'

Where do we go now?  I don't know.  Honestly… our next appointment isn't until January 2014, so I have plenty of time to interview some recommended orthos and pray for someone as amazing as Dr. Segal.  (Although I don't think anyone will ever compare.) 
Would we travel to see him?  Absolutely.  It won't be November-March, but after that… heck yes.  Only the BEST for my baby!



(here he is with M & M on his cap. Long story, but Lucy's first pelvic osteotomy was actually cancelled due to her sneaking an M & M.  So at her 2nd appointment, he showed up in pre-op with this on.  We were cracking up.)


Thank-you God for leading us to our angel.  

"People pay the doctor for his trouble; for his kindness they still remain in his debt." - Seneca









Wednesday, January 29, 2014

Dear Dr. OZ...

I got the idea from a friend…
I couldn't wait to start!
What are we doing. you ask?

We are starting a petition to hopefully get the attention of the national media!

THE DOCTORS show and DR. OZ!

I have started a petition on change.org that is asking (begging, really) for these doctors to do a segment on DDH.
The numbers of infants born with hip instability is astounding.  1 in 1000!
So why isn't there more awareness and info out there?  Good question… BUT… we are standing up and going to do something!  Being in the DDH world for the last 2 years, I have heard some pretty scary stuff… I have also seen some amazing things.  It's time to stand up and do this…

As you know, I have been asked to be the parent/child advocate for One Hip World.
I am so thrilled to be a small part of something SO big and so great.  I am truly honored.

So Dr. Oz…. if you are reading. WE NEED YOU.  WE NEED YOUR HELP.
Pediatricians are missing hip dysplasia left and right.
Parents are confused on what to do.  Parents are scared out of their minds.
There is very little info out there.
Our children are suffering and us parents are overwhelmed.

My daughter, Lucy, had surgery and a body cast at 13 months.  She was in her body cast for 4 months, totally immobile.  After that, she was in a brace for 6 months!
Recently, in May of 2013, she had a pelvic osteotomy.  Wheelchair for 6 more weeks.

When DDH is picked up via ultrasound at birth-6 weeks, a pavlik harness can be used, therefore possibly not needing any surgery… We can only wonder 'what could have been…'  Maybe our lives wouldn't have been surgeries, casts, tears, and heartache… Maybe… just maybe, by doing a show on DDH, we can help prevent this from happening to more children.

Parents like us have started online support groups via Facebook, and One Hip World.
We need more.
We need national attention to DDH.

Please help us!


Love,

Karen
onehipworldkaren@gmail.com

Lucy's mom

:)

LINK to our petition:
(Please sign and share!!!)
DDH PETITION FOR DR. OZ and THE DOCTORS




Wednesday, January 15, 2014

X-ray day



Lucy is officially a THREE year old!
Happy New Year!
I haven't kept up on my blog at all. 
Guess why?!  I have a baby who is crawling all over, and a now 3 year old who has more energy than I thought was possible!  I am actually excited- SUPER excited, actually, to be sitting down and writing this post.
Today was x-rays for both girls.  Lily's 1 year precautionary x-ray and Lucy's 6 month post surgery x-ray.  Talk about nerves!!!  I have had nightmares of both girls needing hip surgery and being in spica casts at the same time.  
Thankfully, all seems to be going well... at least for now.

We get called back at PCH, and I take Lily in the x-ray room.  She lays on the table and is screaming bloody murder.  She has recently developed 'stranger danger' so this was rough for her.
Aaron then took Lucy back, and he told me, 'she's so cute. She says CHEESE when they take the x-ray.'  I remember her doing that last time, with tears running down her eyes.  So sweet and innocent. I hear Lucy leaving the x-ray room with new friends, 'BYE GUYS!  Thanks for the picture of my hips!'  You'd think after all these doctor visits, surgeries and so on, she would be scared of these appointments.  Nope.  She loves it.  She adores Dr. Segal and was looking forward to seeing him all week.  If a kid at school falls down, she immediately tells them, 'Oh no! You need Dr. Segal!'
Dr. S comes in the room, and talks for a bit, and then the computer doesn't work.  Great.  So he tells me to come to his computer and see the film.  We walked down the hall and I told him I am really nervous and he said, 'it's FINE, Karen!'  I said, 'are you just saying that or did you peek at the film already?!"  He just smiles and rolls his eyes... :-) 
There it was.  The x-ray.  I could immediately see the bone growth.  
Amazing.
Where Dr. S pointed out awhile ago that cartilage 'should' grow--- cartilage DID grow. It's now bone and growing over the femur.  He pointed out where the bone graft was, and said it's looking good.  
He did say we aren't ever 'out of the woods.'  We are, however, going to yearly x-rays... (That's a huge deal- haven't had a year break from this EVER!)  
Lily's x-rays look good.  He did say he wants to follow up with Lily at age 2 again- just to be sure.  He's over cautious, which we so appreciate.
I got tears in my eyes looking at Lucy's x-ray.  It's like all the hell we have been through, all the tears, all the horror, all the pain, all the appointments... this is what we have been waiting and praying for.  A good x-ray.  Finally.  
Thank You, Lord! 
 I am beyond thrilled today.  :-)
We left the appointment and I told Lucy that I would take her and sissy for a nice lunch.  She smiled and said, 'I had a good x-ray, mommy!'  That melts my heart.  I said, 'yes you did, baby!  Now where should we go for lunch.'  "McDonalds!!! YAH!'  
Oh great... So.... we called Grandma and Grandpa and they joined us at good ol' Mickie D's for lunch.  Lucy loves to play there... So our celebration lunch was all Lucy could ever dream of.  Chicken nuggets, fries and a chocolate sundae. :)

Recently, Lucy has been able to run.  First time in her life.  She always could walk fast, but the other day, she ran.  PROUD MOMENT!
She jumps on trampolines with both feet off the ground.  She's excelling in school and in PT.  She has the most wonderful little group of friends.  Nicest teachers.  We are so lucky. 
Now, her gait, it isn't normal.  It's hard to explain, but her walk is very 'clompy.'  She always favors the right (good) leg.  Stairs are hard for her.  BUT, there has been improvement, so we are going to keep working!

It's almost been 2 years since Lucy's first surgery.  I look back at these last 2 years and am just so thankful that we are where we are today.  We did it.  We made it through multiple surgeries.  We are currently kicking DDH in the butt.  We are making progress.  I STILL can't talk about some things without crying.  It's too much sometimes.  But.. it's made us who we are, I guess... we've learned a lot from this crappy journey...
All of the parent's out there facing this... don't ever stop praying.  Don't ever give up hope, even though I felt like I did many times.  It took this last year for me to finally sit back a little and really take the attitude of 'God is in control, what will be will be.'  It's a hard way to look at things, but I worried myself sick most days, and I wasn't going to continue to let hip dysplasia ruin our lives!  
Screw You HIP DYSPLASIA!  

I am happy.
So happy.  So thankful.  Thankful for our amazing surgeon, Dr. Lee Segal.  We love him to pieces.  Thankful for our friends and family. Thankful for Miss Hilary, the best physical therapist in the world.
Thankful to be the mom of these two little monkeys that light up my world!

Quick story.  I went in tonight to check on Lucy sleeping.  (I do this with both girls every night.)  I just kneeled by her bed and looked at her.  She's amazing... truly.  Her little spirit lights up every room.  I got tears in my eyes and let out all of the emotions of the day... She looked over at me, half asleep, and said, 'I Love You, Mommy.'  Nothing in the world could have made me happier than hearing that.  :)
Her and Lil are just total perfection.  There isn't a day that goes by where I don't catch myself staring at them and wondering how I got so incredibly lucky.

Here are some pictures, including today's x-ray.

Over and out, from the harsh winter of Arizona... (73 degrees and sunny... it's been rough.)
;-)  


This sums her up.  Full of life and so beautiful!

The loves of my life!
Lucy in her Christmas play at school. She was a cow at the stable for baby Jesus' birth.
Lily's first Christmas 

My 2 princesses
This was on her 3rd birthday.  We took her to Butterfly Wonderland and out to lunch
She got her 'Tummy Stuffer' dog for Christmas.  All is well with the world now that she has this thing...
Her birthday party at school. Do you know that out of all the toys and cake and partying... the BEST part of her birthday was to be able to wear the king hat at preschool...
Her party at gymnastics with her buddies
Lily has the life, huh?!



Waiting for Dr. Segal... Lily eating as always :)

My ONE year old on the 19th of January! I can't believe it's been one year


At McDonalds celebrating


Pic on right was in June 2013, post surgery dega osteotomy.
Pic on left is today... Notice the 'cup' of the pelvis looks rounded and deeper?  YEPPP!!!!!


Monday, October 7, 2013

Giveaways

So much to share!
I have been MIA for awhile on my blog... Been super busy with the little ladies, and finally... FINALLY enjoying some outside time here in sunny Arizona!
Let's get right to it.

I have been asked to be the Parent/Child advocate for the amazing parent-run organization, ONE HIP WORLD.  Honored is an understatement!  Since accepting, I have been busy as a bee trying to fight for hip kids everywhere... even if it's something small, it can mean so much to a family!
With that said- I wanted to share a few things that we are doing.

CastCooler Giveaway- This may be the most amazing product for a spica cast.  Honestly.  I don't know what we would have done without it.  The owner has teamed up with One Hip World, and donated 30 CastCoolers to us to give away!  You heard me right!  Pretty cool, huh?!  




Ivy Rose Spica Chairs- another must have!  The owner and creator, Stephanie, is doing a quarterly giveaway of a spica chair to a family!  This chair and table saved our life and provided Lucy with the chance to have a tad bit of freedom.  She ate in this chair.  She played and colored.  She rocked back and forth.  It was a lifesaver!



This was Lucy after her first surgery in her Ivy Rose chair!  AW!

Snug Seat.  This is the company that sells the Britax Hippo Car Seat.  Usually this car seat is loaned out to families via their hospital, but unfortunately, we have word that a lot of hospitals don't have any in stock to loan.  Parents are stuck with a big bill for a car seat to get their casted child around in.  The regular retail price is $500, and with the promo code, they will be $400.  20% off!  It's still expensive, but every little bit helps!  (Promo Code to come asap!)



The Parent's Guide to Hip Dysplasia book. Author and friend, Betsy Miller is simply amazing.  This book covers everything you need to know as a parent of a child with DDH.  Betsy is offering to donate copies of the book, as well as free ebook downloads!  WOW!  Still finalizing details. More to come!
That's going to be great for our overseas friends, who pay a lot in shipping costs.




Amazon.  One of my favorite online shopping sites.  One Hip World has become an Amazon affiliate and is now receiving 4-6% back on all purchases made through this link.  You HAVE to enter and purchase through this link only.  I am now going to order everything on Amazon!  Diapers, baby food, household items, etc... We also get extra percentages if someone signs up for Amazon Mom or Subscribe and Save.  With Christmas coming up, we could really raise some serious funds!  If you have a facebook page or a blog, please link up and support One Hip World with this link!

HERE IT IS:  



Boba baby carriers.  Another great partnership from one of my favorite baby items.  Boba carriers are hip friendly and simple to use.  You can read here about my love for Boba!  They are sending me a few donated carriers to give away, and I am in talks with them of a promo code for us!  Hip Hip Hooray!
More info on how to enter soon.

Another cool thing I have just found and started using is called Receipt Hog.  What is it?  It's an app for your smartphone.  You snap photos of grocery receipts, including Target/Wal-Mart, all grocery stores, drugstores, and dollar stores.  I even snap pics of my receipt from Starbucks at Target.  Since it's at Target, it still counts!  You get points for each receipt submitted.  The company will send you a check once you have reached a certain amount!  It may not be a ton of money, but if we can have 100 people do it, sign over and mail their reward checks in to the IHDI, we could raise a lot!  So download the app if you can!  Super easy to use.  How they can do it is this: they track your age and area and see what you buy, then sell that info to marketing companies.  Great way to earn some do-rey-me.

So you know you can't get away without seeing a few pics of the babes, and hearing an update. :)
We are all doing great right now!  Lucy is still in physical therapy, and making improvements weekly!  She loves her preschool, and is going to be doing a walk a thon at the end of the month.  (sniff sniff!)  
Lily is perfect in every way, just like Lucy.  Bias?!  Nope.  It's true.  They both are simply perfect.  

I am so happy to be the parent/child advocate for an organization like One Hip World.  It's so dear to my heart, and I am ready to tackle this head on!

Thanks for reading, and let's kick some hip dysplasia butt! 

This is why Amazon is going to be so great for us!  NO MORE MALLS!  



Yep, that's my baby on the ferris wheel. She lasted about one minute then said DOWN!


I melt every single time I see this!  Preschool pic!
My little darlings after our 'spa day!'

Saturday, September 7, 2013

Guest Post: Tamara Hansen's JOY


“She will never have normal hips, but we can help her so she can do normal things.”  

Those are the words our beloved orthopedic surgeon said to us said softly to us as we talked over Joy’s bed in the recovery room after her last surgery.   It also words that I have replayed in my head over and over again since.  Right then I let the actual details of the surgery, and the previous ones, all slip away from my mind.  All the tears, heartache and fear kind of just melted into a puddle.  It wasn’t about looking over x-rays, or trying to understand the mechanics of her hips, or talking about what comes next.  His words right then summed it all up.  I found it comfort in his confidence and peace in his simple way of putting our journey in perspective.   We aren’t done.  She will never be free of this.  Yet, we will stay the course.  We will do whatever we have to do to give her “normal”.

He went a little bit further and talked about “playing sports and having babies” as examples of things he’d make sure she could do.  Wow.  What a sigh of relief, yet how terrifying too!

Of course I want her to feel capable of to running a marathon, joining the soccer team or whatever she makes her feel healthy and happy.   Having babies, that’s hard one to think about when she’s only in preschool, but sure I want her to be able to do that if she chooses also.  It isn’t about scoring the goals, being the fastest or giving me grandchildren.  It’s about her having the opportunities to do whatever brings her satisfaction.  Isn’t that all any of us really want for our children anyway, is for them to be happy? 

So, as I replay this message he gave us in my head I think about just that.  I think about how even though this has been one hard road and I hate to think about that we have more surgeries ahead,  that it will be all worth it.  It will be worth as it to know that as she grows up she may have to work harder than some, but she can do whatever  she wants to do.  That hip dysplasia is not stopping her.


Of course, I will always be her number one cheerleader, that’s my job as her mother.  On the outside looking in I am sure I will always be the loudest, most energetic and embarrassing mom on the sidelines.  Yet, on the inside I am terrified of letting her be normal.  It’s hard to admit, but it’s painful for me to watch her do some of the things other kids do.

I have not taken her back to Mommy and Me gymnastics since before her last surgeries.  Instead we play Yoga, gymnastics and dance class at home where I get to be the teacher according to my own comfort level.  When we’re out – just us, with friends or with our play-group I am constantly fighting the urge to hover over her on the playground – and those hips.  
Often the urge wins and I am spotting her as she climbs, asking if her anything hurts and holding my breath as she plays if not I am not in arm’s reach.   I hate that I am always following her, and I do try to keep a distance to give her a healthy space, but I am terrified to let her just be for long.  I have a few close friends that I trust to watch her while I nurse the baby, run to the restroom or grab something from the car but even that is hard.  It’s so hard to let go of the worry. What if she falls?  Will they see if she is wobbly and help her up?  What if one of her legs gets stuck or pulled?  What if she tries to do something her hips aren’t strong enough to do?  What if another kid grabs her by the legs?  What if she doesn’t tell me if something hurts?  What if whomever is watching her doesn’t  know her history?  What if they don’t understand?  What if they think I am just one of those “helicopter parents”? 

My mother always told me “what ifs” will make you crazy.  Okay, so I am crazy.   I  I don’t want to be like this.  It’s not healthy for any of us.  It’s hard though.  One of the hardest things I’ve ever to do.  Some days are worse than others, some playgrounds scare me more than others, the dynamic of some kids play concerns me more.  Sometimes I feel  more trusting, more secure and more brave that she will be okay.  That she knows her own limitations.  Then other times, if she is following someone around, I am terrified that she is going to try do what they are doing - but they don’t have hip dysplasia!  I am really working on this.  It’s a huge struggle for me right now. 

Especially that she just started preschool a few weeks ago.  We are doing a co-op so I work there once a week and she has a drop-off day once a week.  We have yet to do the drop-off.  I have written on her paperwork about HD, she really doesn’t have any restrictions but we don’t want her pulled by the legs.  I have talked to the teacher a little about her history and there are a couple of friends/moms there that know us well.  Yet, I am still so nervous.  I have been so tempted to tell everyone of them our story.  To please, please watch her extra carefully.  I had goose bumps when another mom stood up in front of all the parents at a meeting and asked them not treat her son who is going through his own orthopedic issues any differently.  I was in awe of her.  There was no way I do could do that. It was hard enough for me not to stand up and share our story and ask them to make sure they didn’t let anything happen to my baby girl and her precious hips.

But, I didn’t and I am not going to.  I am trying to let her just be a normal kid as much as possible.  As much as I want for her to have strong hips and be pain free, I equally want her to have a healthy amount of confidence and trust in her own abilities.  If I keep hovering over her and trying to keep her from feeling independent, than why I am putting her through her surgery after surgery?  Isn’t the whole point so she can “do normal things”? 
We have our big follow-up next week.  We have not had an appointment and x-rays since January, when she got out of her brace after 13 weeks in it full-time following her pelvic osteotomies last fall.  The bone grafts were looking great then, she started walking the same day and now running even better than before.  We do have things to talk over with our doctor, but he has assured us we deserve some successes along the way and we are on a break for a few years now.  Praying this stays the same.  Also praying for some positive news on the AVN front, that maybe some blood supply is returning to the femoral heads.  Of course I am in the midst of the week before an appointment anxiety big-time right now, so I am also replaying those words more than ever.  “….so she can do normal things”. 
Who knows, maybe she will take after me and be much more interested in getting elected for student government than trying out for the gymnastics team anyway? 









    


Thursday, August 29, 2013

Guest Post: Betsy Miller

Ask and you shall receive...
I wanted to have another 'hip' friend do a guest post on my blog.
I am SO very honored that Betsy Miller offered to help me out.
ENJOY!





Hi, I’m Betsy Miller, the author of The Parents’ Guide to Hip Dysplasia. Today I’m going to talk a bit about my early childhood treatment for hip dysplasia. Back in 1962 when I was a baby, my mother noticed that something seemed wrong with my hips. I have two older brothers, so I think that’s one of the reasons my mom picked up the problem. Not to mention, she was a very smart person.
When a baby’s hips are both dislocated, it can be hard to spot hip dysplasia because both hips look the same. During a typical infant hip exam, doctors check for asymmetry (if only one hip is affected), and for a hip click—the sound of femoral head (the ball at the top of the thigh bone) going in and out of the socket when they move the baby’s legs a certain way. If the ball never goes into the socket, then there isn’t a hip click.
Sometimes these cases aren’t caught until a child is of walking age. The child isn’t in pain from the dislocations, but the hips tend to look wider than usual, sometimes the feet appear to turn out or in, and there’s a characteristic walk called a “waddling gait” once the child starts walking
Since we don’t have any family history of hip dysplasia, I’m not surprised that mine wasn’t caught when I was a newborn, but I’m forever grateful that I was diagnosed and treated. My parents took me in to be seen by a pediatric orthopedic surgeon. In fact, they took me to a number of doctors for second opinions because they were hoping to avoid an open reduction (surgery that involves cutting open the hip joint). They chose the only doctor who was willing to try for a closed reduction. With a closed reduction, the child is put to sleep with anesthesia, and the doctor maneuvers the hip into place.
So off I went to the hospital for traction to loosen my muscles for the closed reduction. I was a baby, so I don’t remember this, but my parents told me that my mother visited me every day and breastfed me. The nurses disapproved, because at that time, the prevailing wisdom was that bottle-feeding was much healthier, but my doctor said it was fine for my mom to keep breastfeeding. I’ve also been told that when I got bored I would fling my pacifier across the room and yell until a nurse came in to give it back to me. Hmm, maybe I wasn’t their favorite patient.
To get on with my story, after the traction, I had a bilateral closed reduction. Then I wore a Petrie cast with a bar between the legs. After the cast came off, I wore a soft, cotton brace that my mother had sewed for me. I don’t remember wearing the cast or brace, but I do remember being put to bed in a frog legs position. My mother showed me the brace once when I was an adult.
I grew up running around and playing like any other kid. The only restriction I remember is when I asked for ballet lessons when I was about five. The doctor was concerned that might loosen my hips too much, though he said dance in general was fine. So I tried tap dance with one of my brothers, but then I got bored and went on to the next thing—probably jump rope , hop scotch, or roller skating.
Now that I’m 51, I’ve had to slow down a bit. I get hip pain if I stand or walk on concrete for a long period of time. At some point I will probably need total hip replacements, but that’s years away. There’s
no doubt in my mind that without treatment I would have had significant problems from my teen years onward.
Every hip dysplasia story is different. Your child will have his or her own path. Just remember when you’re traveling that path together, that in the end, you’ll get through it and your child will have a better life. That will be the gift you have given your child.

Sunday, August 4, 2013

Baby carriers 101

Hello, and welcome to Baby Carriers 101!
I have been wanting to write this post for awhile, but going to the baby store the other day to look around really fueled my fire!
What happened you ask?!
I was walking by the baby carrier section.  Of course, the biggest end display was Baby Bjorn.  The sales lady was talking to a family about how great they are.  She said, 'it's great that your baby can face out and see.'  The lady said, 'I heard it's bad for their hips?' The sales lady said, 'oh no, that's not true.'
WRONG WRONG WRONG.
My blood is boiling at this point.  I am looking at her young daughter who is very pregnant, and thinking, OH MY GOSH what if she has to go through what we did with hip dysplasia?
I couldn't take it anymore.
Like a psycho stalker, I waited for the right moment and went over to them.  I said, 'I am SO sorry to bother you, and I don't mean to be weird, but my daughter was born with Hip Dysplasia.  These are the WORST carriers for any baby to be in.  It can cause their hips to dislocate.'
I went on to explain to them that my daughter has spent close to 1/3 of her life in casts and braces due to hip issues.  Thank goodness they didn't punch me in the face, and they were very receptive and asked a lot of questions... WHEW!  I led them to the good baby carrier section of the store, and they bought a BOBA carrier.  YAY!  Made my day.
So, let's get to WHY the front facing-crotch danglers are bad for your baby.

1.  Overstimulation.  A baby is learns from mom or dad's facial clues, and overstimulation of the world around them is NOT good.
2.  HIPS HIPS HIPS!  When a baby is facing forward, there is no support around the knee or thighs.  They are simply 'dangling' from the crotch.  With no support, the hips can slip out of socket.
3.  It's awful for the parent's back!  Front facing carriers are not good for the person wearing them, or the little person in them.

The pic on the left! YIKES!


Remember Lucy's cast?  Well, the cast keeps the baby's legs apart, in a frog leg position.  Why?  That is the best position for hip growth.  It forces the femur in to the socket of the hip, which makes for a happy hip joint.
Harnesses and braces that are used to treat hip dysplasia also keep the baby's legs frogged apart.

Any carriers, bouncers, slings, chairs that keep your baby's legs together or 'dangling' are NOT good choices for healthy hips.

With that said, do we use a bumbo chair?  Yes.  My 6 month old with good hips is allowed in there for about 10 minutes a day to watch me do dishes. :)  No more than that.
Same goes for jumperoos, excersaucers, and especially walkers.  Those contraptions do not allow the legs to be free, therefore can cause hip issues.  Again, if your baby is doing well at his/her hip checks with the doctor, a little bit of time in one of these things isn't going to hurt... just not for long.

If a baby carrier has support for the baby through the back of the thighs to the knee, most likely it's a good one!  Carriers that keep the baby's legs together are not good.  Even though there may seem like the baby can move if he/she wanted to, usually a baby won't fight against the material.  You want the legs to be able to fall open, aka good hip position.

Baby's hips and joints as newborns are very laxed due to the hormone, relaxin, that the mother produces and passes on.  The more you can support the joints at the hip, the better your baby will be.

TAKEN FROM THE IHDI SITE:


After birth, it takes several months for the joints to stretch out naturally. Babies that have been in the breech (bottom first) position may need even more time to stretch out naturally. The hip joint is a ball and socket joint. During the first few months of life the ball is more likely to be loose within the socket because babies are naturally flexible and because the edges of the socket are made of soft cartilage like the cartilage in the ear. If the hips are forced into a stretched-out position too early, the ball is at risk of permanently deforming the edges of the cup shaped socket (hip dysplasia) or gradually slipping out of the socket altogether (hip dislocation). Hip dysplasia or dislocation in babies is not painful so this may go undetected until walking age and may also result in painful arthritis during adulthood. The risk of hip dysplasia or dislocation is greatest in the first few months of life. By six months of age, most babies have nearly doubled in size, the hips are more developed and the ligaments are stronger, so are less susceptible to developing hip dysplasia.

The most unhealthy position for the hips during infancy is when the legs are held in extension with the hips and knees straight and the legs brought together, which is the opposite of the fetal position. 

The risk to the hips is greater when this unhealthy position is maintained for a long time. Healthy hip positioning avoids positions that may cause or contribute to development of hip dysplasia or dislocation. The healthiest position for the hips is for the hips to fall or spread (naturally) apart to the side, with the thighs supported and the hips and knees bent. This position has been called the jockey position, straddle position, frog position, spread-squat position or human position. Free movement of the hips without forcing them together promotes natural hip development.


See how bent and flexed the baby's legs are?  Forcing them to stretch after birth can hurt their hips! 



I really wish pediatricians would have this discussion with new parents.  Or at least pictures describing good and bad carriers in their office.  Since they don't, yours truly is here to help:






See how the baby's crotch is the only thing supported in the bottom left photo?
See how in the slings the baby's legs are forced straight and together?
Please don't!

YIKES!  I can't believe this company can make these with a good conscious!
BAD BAD BAD!  Zero hip support.
Crotch dangling.


Zero support anywhere for the legs and hips.  Even though these are inward facing, they still have NO support!
NO NO NO NO NO NO NO





OK, Now let's get to the good ones!



HIP HIP HOORAY!
See how the baby is supported through the back of the thigh?  Total support for baby.

YEP.  Good ones!  Support!  I can't imagine being dangled by my crotch!  This  looks way more comfortable.

Super cute wraps and carriers.  Right on.

She's got it!  GOOD JOB mama.

Thank you to my beautiful model, BRIER and her amazing daughter Jocelyn for this photo!
Carrier shown is my fave, BOBA

See on the right how the baby's legs can wrap around mom or dad?  WAY better than the one on the left!




Buying a good carrier may cost $20-$30 more than a crappy one.  But trust me.  Surgeries and hip issues for life will cost you way more.  Mentally and physically!

Here is a list of brands I recommend:


BOBA- rated best baby carrier 2012
So the reason I like the Boba is this.
It doesn't require an infant insert.  
Super easy to put on.  It can support an infant all the way up to a big kid!


I hope this post has helped!  I also hope you will share it and pass it on!



- Karen

aka Lucy and Lily's mama!