Adventures in Hip Dysplasia

Emma's collection of harness's, braces, and casts.
(wearing her rhino brace)

Hip Dysplasia occurs when the top of the femur is not properly located in the hip socket or where the hip socket is expected to develop. 

           When Emma was born she was the picture of health. A beautiful 6 lb 14 oz baby girl with big rosy red cheeks and lots of blonde fuzz. The doctor came in to do the rounds and inspect all the newborns. Everything looked great. The only problem he found with Emma was that her left hip clicked which indicated possible hip dysplasia, but he didn't seem too concerned and referred us to a pediatric orthopaedic surgeon just in case she needed a brace. I remember holding Emma and thinking, how unfair, my poor little baby with the hip problem. Little did we know, Emma had many other battles that were just beginning.

Pavlic Harness  - 3 weeks old

         So, when she was just 10 days old we brought her in to see the amazing Dr. Mary Beth Deering. We had no idea that she would soon become one of Emma's most important caregivers. They did an ultrasound of her hips and found that not only the left, but both hips were displaced. Dr. Deering prescribed a pavlic harness and Emma was to wear it ALL the time. It came up over both of her shoulders and went down to both of her feet. We watched as our perfect new baby was awkwardly stretched and positioned in this weird looking device. She could no longer be swaddled and breast-feeding would become increasingly difficult. I left that first appointment in denial and angry that Dr. Deering could expect us to put this unnatural thing on such a tiny baby. We wore it on her anyway and after 8 weeks there was no progress. "What a waste, we tortured our baby for nothing," I said to Justin, "this doctor has no idea what she's talking about." By this time Emma's vision had become a question, she was loosing weight, and spent her days and nights screaming in discomfort. It was becoming apparent that we were dealing with more than just hip dysplasia. So when Dr. Deering prescribed a rhino brace we politely smiled and nodded. We would do our best to wear it on her, but life with Emma had become really hard and it seemed appropriate to let the hip dysplasia take a back seat for the time being. We really did try to keep her in this brace as much as possible, but then one day when Emma was 3 months old, after a visit to her pediatrician, we were admitted into Montrose Memorial Hospital and then transferred to Denver Children's. After that it was as if the medical issues kept piling up. Just when we had come to terms with one scary possibility, another would be added to the list. I hate to admit it but the hip dysplasia was ignored for a couple of months.
         When things seemed to settle down a little bit we went back to Dr. Deering. The news was not good, Emma's hip sockets were still not formed and her high muscle tone was really adding to the problem. She wanted to do surgery and start giving her botox treatments to mellow out her tone. Emma was seven months old when she had this surgery. Dr. Deering cut her adductor muscles (inner thigh/groin) so that it would be easier to keep her legs "frogged". Then she was given her first round of botox and fitted with a cast. Emma recovered remarkably fast and began weekly physical therapy almost right away.

Justin and Emma after her most recent botox treatment.
(Still sleepy from the anesthesia)

         It turns out I was wrong. Dr. Deering DID know what she was talking about. In fact she's very good at what she does and has become one of our favorite people. She has taken a special interest in Emma and has helped us to treat her for all kinds of problems, from diaper rash to feeding issues, things that have nothing to do with orthopaedics. She has introduced us to other families who have children with special needs. She has set us up with specialists, therapists, and support clinics. Dr. Deering has a genuine concern for her patients and their families. She truly loves all the little people she works with and has become an essential part of our team. For now Emma's hips are looking good, the left is in socket, but her right is still a work in progress. She receives botox treatments once every 3 or 4 months in hopes that she will gain more control over her muscles. It has been helping tremendously. She still wears her rhino brace for about 16 hours a day.

Photos

Emma on her first birthday. 

Papa and Emma during our first long stay at The Children's Hospital in Denver

Emma and I going for a little stroll outside the hospital 

Enjoying her new tumble forms chair

Emma with her N.G. feeding tube (3 months old)

Shortly after her G-tube was placed. (5 months old)

Myself, Emma, and Justin in Denver children's hospital (7 months old)

Justin comforting Emma after a surgery

Close encounters with the 3rd kind. ;) ......(having an E.E.G, 11 months old)

Emma at St.Mary's hospital in Grand Junction, CO

.......sleep, yeah, right!

Sleep study

 Being cute in our garden

Botox treatments for muscle tone, St.Mary's Hospital

Emma and papa (nightly nebulizer treatment)

INTRO - A very special girl

      This is the story of our beautiful little girl. Her name is Emma! Lately a lot of people have been asking me about Emma. "Is she better?" or "what's actually wrong with her?" These are hard questions for me to answer. Usually I just smile and say "she's had a rough start, but is coming around nicely," or "she has a lot of health issues, but we're doing just fine". If I'm lucky Emma will give them one of her huge smiles and they leave feeling reassured and comfortable with my lack of detail. Then I quickly turn away before they see the tears welling up in my eyes.
       So, I decided to start a blog for friends and family who are curious or concerned. Hopefully this will help to clear some things up as well as keeping you all updated on little Emma's situation and progress.
       Let me just start by saying that Emma does not have any one specific diagnose or known reason for all of her struggles and it's not for a lack of trying that we haven't found anything. We have spent much of the last year in and out of hospitals. She has a big team of amazing doctors, specialists, and therapists that follow her. Emma has severe delays in her development. She is currently in therapy 3 times a week. She is primarily fed through a tube and is very tiny for her age. She has been under general anesthesia 7 times in her short 14 months of life. She also has hip dysplasia and an alternating muscle tone. Emma has been tested for every genetic and metabolic disorder you can think of. She has had M.R.I's of her brain, E.E.G's, E.K.G's, E.R.G's, you name it. Any major test or scan she's had it and all of them have come back "normal".  The doctors have prepared us that we may never know what's "wrong" with Emma. This is very frustrating and for a long time I found it unacceptable. I would think to myself, what if Emma is that kid that goes undiagnosed and then it ends up being too late to treat her. I wanted a reason for all of this and I still do, but now a days I'm dealing with it a little differently. Although I will continue to advocate for her, I have started to accept the fact that it just is what it is. Emma is who she is and I'm okay with that now. She is BEAUTIFUL, she is DETERMINED, she is STRONG, she is SPUNKY, she is SMART, she is a FASCINATING blend of BRILLIANCE with HANDICAPS................ she is truly a WONDER!