Gina Jay is an author, advocate, mother, wife, and creator of the fundraising/community organization, One Hip World. Gina’s entrance into the world of hip dysplasia was a rough one. Her daughter, Mia had a severe case of hip dysplasia and they endured much hardship. But through it all Gina became an outstanding advocate, a voice for those affected by hip dysplasia.
Here is Gina’s Story:
Before hip dysplasia (and still, to this day), our lives were incredibly beautiful, and incredibly challenging! Our daughter, Mia is our ‘miracle’ in many ways. My husband Michael and I were told that we could not have children. For the first 16 years of our marriage, we lived our lives believing that God had simply said, ‘no’. While it was hard, we did our best to persevere in faith, and trust His plan for us. Then, just before I turned 40, after having lost a good bit of weight, God said, “Okay, now.” And, gave us our girl!
Our challenges began right away, since Mia was always a very fussy child. At birth, and for the first full year of her life, she had pretty severe torticollis. We were thrown into the world of pain medicines and we were shown the correct ways to massage her to try to help her neck muscles ‘straighten up’….still, she suffered. Around 8 months of age, while her torticollis was still going strong, she began vocalizing two important words, “legs, ouch”. Every day I would call her pediatrician’s office saying something was wrong, every night, Mia and I would pace the floor for hours at a time while she agonized. I would take her into the doctor’s office weekly telling them that “something was wrong”. I was told, “it’s growing pains, and it’ll pass”. At one year of age, just as they were beginning to talk about surgery to correct her torticollis, her neck suddenly straightened. (Thank you, God!) She didn’t need surgery for that!
My husband and I noticed that she seemed to not want to be ‘mobile’. She wouldn’t use her legs much at all! Again, many, many calls to the doctors, and we were told that “children tend to focus on one area at a time, and since Mia’s vocal skills were so good, that clearly she is focused on those, more than crawling, walking, etc.” I could not make them understand that she wasn’t displaying a lack of interest in being mobile, but that something seemed to be stopping her….physically. Finally, at 13 months old, she began to crawl. It was a very awkward movement, and I knew right away that it was ‘different’. More phone calls and doctors’ visits ensued. “She’s fine, you worry too much.”
In the meantime, our nights were filled with screams of agony and pacing the floor for hours on end trying to comfort her. It was exhausting, not just physically from the lack of sleep, but mentally and spiritually as well. I can’t think of anything worse than watching your child suffer so tremendously, and feeling helpless to help her. One thing we as parents know is that when they suffer, we do too. Mia finally took her first steps at 17 months with assistance, and walked unassisted at 21 months old. When Mia finally walked, her steps were very ‘deliberate’, and very awkward. She would ‘swing’ her left leg forward in order to move it out in front of her; there was no “natural, flowing” movement as in a normal walk. When she stood, her back was arched, a lot. There was a distinct curvature to her back…we now know this is called ‘swayback’.
Five pediatricians (one of whom was the Head of Pediatrics for a rather large insurance group) saw Mia throughout this process of phone calls and visits. At 28 months of age, when I finally took her to the ER and sort of flipped out on them…lol…..they finally did an x-ray, and we had our diagnosis.
To know that despite our best efforts, that our daughter’s dysplasia was missed is, yes, heart wrenching. As a parent, you immediately internalize it and blame yourself. “I should have tried harder….I should have yelled louder.” Know now, that you cannot be held accountable for that which you did not know. Beating yourself up will only deter you from your current mission….and, there is a fight at hand. However, knowing now what we didn’t know then, we can see and understand how it was missed.
There are two main contributing factors as to why this was not discovered. First, Mia’s dysplasia was so severe, that she actually appeared “A symmetrical” (equal) on both sides. This was only because both of her hips were equally ‘messed up’. The second reason boils all the way down to lack of research and awareness. Had there been more research over the past 60 years, we would know so much more now!!!! And, because hip dysplasia has not been focused on for so long, the pediatricians who are so VERY important to all parents (let’s face it, our pediatricians are our first line of defense against EVERYTHING!), are completely unsure of what to look for. We need them to know!
It was Children’s at Egleston Pediatric Hospital emergency department who referred us to Pediatric Orthopedics of Atlanta. After a couple of months and several consultations, we received what was one of the greatest blessings in our hip journey. Enter, Dr. John Heflin. He was just starting with this practice, and he was nothing short of a gift straight from God. Being so confused and disheartened and anxious, this man entered our lives with love, compassion, wisdom and expertise. I shudder to even think of how our journey would have been without him. Having a surgeon who ‘hears you’…listens, responds, comforts, teaches and walks with you is so very, very important. If you are an hd parent, search out a doctor you can relate to and feel comfortable with…if you are a doctor, please remember how critical you, your expertise and your compassion are to us, and know that you are loved and appreciated.
Mia’s treatments for her hip dysplasia began two months after her diagnosis. In August of 2011 she underwent her first surgery, an ‘open reduction, Pemberton osteotomy with femoral shortening.’ She wore her first spica for approx. 6 weeks, when we had to take her back into surgery to address both a reaction to the liner of her cast, as well as a pressure point ulcer which was forming on her spine. Her cast needed to be changed, and so in we went, and she wore the second cast for another 6 weeks or so. After approximately a month of being out of spica, we taught Mia to crawl, stand, walk and potty train a second time. Just when she was mastering these tasks again, surgery time was once again upon us.
In March 2012, we went in for her third surgery. Same procedure but now it was time to correct her left side. This surgery brought with it some extra, extremely overwhelming challenges. This was the surgery left our daughter paralyzed and we almost lost her completely. I hesitated to include these details, because I didn’t want to frighten anyone. Please, PLEASE know that each child is different. Your child’s hip dysplasia may or may not be as severe as our Mia’s, and you may or may not face similar challenges.
Mia’s severity is somewhat uncommon. I decided to include these details for one reason, a friend, and someone I admire very much, Adrian, the Director of Larry the Cable Guy’s Git-R-Done Foundation, said this to me once, “you have to tell them, Gina….knowledge is power. Even when it’s scary knowledge, its still power.” And, he was so right! You can’t fight an enemy you don’t know. Hip Dysplasia is an enemy that almost seems to metamorphasize….changing as it goes. It has a way of throwing curve balls and delivering setbacks.
One of the biggest frustrations in the battle of hip dysplasia, is the “wait and see”….there is a LOT of this! “Wait to see what the body does to heal itself…. wait to see if the ‘angles’ get better, wait to see if it will “correct itself” with the brace and so on.
During her second surgery, Dr. Heflin was faced with a very upsetting decision. Because Mia’s left femur had drifted up more, and was now in her rib cage, and because he had exhausted all chances to pull her leg down far enough to get it into the new hip socket, he had to either leave it out permanently, knowing the pain and quality of life she would have, OR “take out her left leg”. To do this, he had to cut ‘everything’….muscles, ligaments, tendons, all of it. He chose to ‘take out her left leg’….intentionally paralyzing her temporarily, so that he could get the leg in, and knowing that in time the nerves would come back. He truly believed in his decision. We truly believe that God was guiding him in his decisions and his surgical expertise. Dr. Heflin made a difficult decision, but one with Mia’s best interest at heart, and one that we are grateful for. Who knows what would’ve happened had he chosen the other option. He braced us for years of potential paralysis. All of ‘Team Mia’ sprang into prayer action….and, we know they were heard. On the morning of day 6, she moved her big toe, paralysis gone.
On day two, post-surgery is when we almost lost her. Though she had not lost much blood in this surgery, suddenly, her vitals began to spiral, and before I knew it, doctors and nurses were running about. She required an immediate transfusion to save her, and I’ve never prayed before the way I did during those few moments. “I don’t care if she can’t walk (paralysis didn’t leave until the 6th day), just leave her with me.” It was during this time that I thought of everyone who fights…. everyone who hurts, every frightened child and parent. I vowed, “no more.” Never again would a Mommy or Daddy stand beside their child’s hospital bed crying like that, frightened like that, helpless like that. No more.
A month or two after Mia’s diagnosis I was desperate understand her disease but was unable to find anything on the web not related to dogs. I did, eventually find, the International Hip Dysplasia Institute. Through the initial call I met and immediately loved Susan Pappas & Dr. Charles Price. I asked, quite simply, “What can we do to help.” Dr. Price explained the mission and vision of the IHDI, and the overwhelming need for more research and awareness. Research costs money, it’s a fact of life. That is why in 2011 I decided to start One Hip World.
I believe God wanted One Hip World to accomplish several things. 1) It would bring the hip dysplasia community together so that those who fight didn’t feel so alone. 2) It would raise awareness. 3) It would encourage those who fight by empowering them with a way to fight back! One Hip World encourages everyone to ‘fight back’! We do that through fundraising. Bake sales, car washes, 5K’s, you name it and THEY have organized them and made it happen! In less than 2 years One Hip World has raised over $41,000 for further research and awareness. Each and every member, of which there are thousands, choosing to step up and help themselves and others! Taking back control of their lives, and helping to uncover the mysteries that are hip dysplasia. The more light you shine on something, the less frightening and intimidating it becomes. Once you can see it for what it is, you can find a way to counter attack. It is such a privilege to share the “battlefield” that is hip dysplasia with such an incredible group of people.
It was also rather early on after the diagnosis, that my best “hip” friend and now “sister of the heart”, Julie Beattie came into our lives. Julie and I firmly believe that God put us together. From our first “chat” we became immediate friends and felt connected. Julie’s daughter, Abbey is an hd fighter as well. Julie and I were frustrated by the lack of resources available to assist in explain to our daughters what was happening to them. We found other ‘character’ books to read our girls, “___ goes to the hospital”, sorts of things. Again, God spoke up and said, ‘write a book’. Knowing absolutely NOTHING about writing a book and being very quick to want to say ‘no’, God gave me a title, and a bunch of words, and I started writing them all down. I called Julie, she immediately jumped in with “elaborate on this….leave this out” and together, we worked until we had what we feel God had commissioned, “Hope the Hip Hippo”. She gets her name from Jeremiah 29:11, for He does indeed know. Hope’s job, is to give the children a friend, someone they can relate to, and to give the parents a way to share what’s happening in a less frightening way.
Today, we are continuing in our personal fight. We are still experiencing some ongoing pain and muscle weakness which may or may not be attributed to Mia’s hips, but we are continuing to search for answers. In June, we will meet our new surgeon who has some very big shoes to fill, since our dear Dr. Heflin and his family moved back home. We have been blessed with AMAZING people who have loved and support us the way. Each and every one of them played a different role and brought with them unique gifts, without them we’d have been in very big trouble! We are also so very VERY grateful to Dan & Cara Whitney for the work they do with IHDI. Had they not done what they did then it would not be here for us now and if we do not do our part, it will not be there for those who come after us! The gratitude we feel towards Dr. Price and so many others who work so hard for the answers we need is inexplicable. Yet we are humbled by their love and determination to use the gifts and ‘calling’ that God gave them to help and to fight for all of us!
As far as our continued plans for raising awareness, that one is simple. Whatever it takes! Speaking, writing, whatever we can do! No child, teenager or adult should ever experience the pain, anxiety and fear I have watched Mia endure, and if I can help it…. no more will, God willing!!
Continue to fight the good fight, know that you are never alone, and as we say at One Hip World, “Together we CAN, Together we WILL!”