Hope

Fibular Hemimelia
Florida

There is Triumph in Adversity

While I was busy praying for my daughter’s miracle healing, I wasn’t prepared for ALL the ways that God would answer that prayer…silly me!  From the moment we knew there was a problem in the womb, we began praying that God would instantly and miraculously heal our baby girl; and for part of her original diagnosis, He did. I am convinced that one test result stated there was a missing portion of the sixth chromosome and the next test result revealed a completely different outcome.  But at the same time, God also chose not to heal her foot or leg and so began the journey of wanting, waiting and discerning.

We named her Hope. Her name comes from Jeremiah 29:11, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.”  She was named before we ever knew there was a problem and yet all along, her name has predestined our journey.  Dr. Dror Paley gave us Hope that our daughter could have a future.

During Hope's two-year treatment at our first facility in South Florida for “just” a club foot, our family and friends prayed for Hope’s healing, but it did not come.  In fact, she kept getting worse.  We lost confidence in that facility’s ability to treat her.

The Lion and the Lamb

One day, I overheard the doctor scolding the nurse (who had been with Hope since she was five days old) saying, “Yes, Hope’s foot turned back in again, but she doesn’t need an x-ray! Her foot and leg will never be ‘normal’ and everyone needs to just get used to it!”  For those who know me, defeat and negativity is NOT acceptable.  Our prayers changed. We asked God to provide a doctor who could truly understand this challenge and help us. Turns out, He had recently moved the most experienced doctor in the world all the way from Baltimore to West Palm Beach!  Dr. Dror Paley opened the Paley Limb Lengthening Institute a mere 20 miles from us…and just in time.

Within seconds of looking at an x-ray, Dr. Paley immediately explained to us that Hope's condition was diagnosed as fibular hemimelia. He clearly explained the difference between a club foot and what she really needed for treatment.  She had undergone soft tissue therapies, eighteen times under anesthesia, post-remedial releases, etc., but they were not going to work. First, we had to fix the bones to hold the tissue in their appropriate place.  Finally, this made sense to us!  We had found our next step.

Don’t think for a moment that our family ever stopped praying for a healing hand to spare her the pain and agony of the bone lengthening process.  I can’t say that it’s been an easy journey.  Yet each time, we sat back and watched as God gently said, “No” to our requests that Hope be spared.  Hope’s testimony, as is the story of many of Dr. Paley’s patients, is that sometimes the storms in our life bring about the most beautiful rainbow of blessings.  Dr. Paley has always held a positive outlook. He has never given up on us and he is willing to defy standard conventions to achieve positive results.  It may not always seem that way, but watching Hope run and climb, jump and dance is proof enough for me.

Having the right doctor doesn’t guarantee smooth sailing. On February 24, 2011, when Hope was still only two years old, we took her to the hospital for Dr. Paley and his amazing staff to commence with the bone lengthening and “super ankle” reconstructive surgery only to face the agonizing revelation that Hope’s main artery had torn upon closing and she might lose her leg.  The tear appeared to be the result of scar tissue from prior procedures and not because of anything Dr. Paley or his team had done.  His quick thinking brought in a team of specialists to find a way to save her leg.  Drs. Pinsky and Austin were there within 10 minutes to act as Hope’s Micro-vascular Surgeons.

Twice, we heard there was a good possibility of amputation.  Over the next three and a half weeks, just shy of a month,

Dark days in a coma

Hope was in the hospital; and for the greater part of that time, in a medically induced coma in the PICU. She spent twice a day in the hyperbaric chambers trying to bring pure oxygen to her leg.  Um, really God? That wasn’t quite what I had in mind when I prayed for her healing. 

Fast forward to how God used that time, and the expertise of Dr. Paley, his team and his staff, to reveal just a glimpse of the plan for healing our Hope.  The artery that tore was her only artery, where most people have three.  This danger lurked in the background, as I call it a ticking time-bomb waiting to explode.  When it collapsed, the doctors tried valiantly to save it, but after twenty hours of surgery there was nothing more they could do.  My entire family, friends, loved ones and our community were all praying in agreement that God would have given Hope a successful surgery – for bone lengthening.

So why at the end of the first day were we facing the difficult decision of telling the doctors to amputate her leg?  Did God just not hear us or did He not care?  We took Hope in at 6 a.m. on February 24th and did not get to see her until around 2 a.m. the next morning.  She looked so frail and weak, but she was and always will be, a fighter!  I will never forget one of her many dear care-givers, a huge muscular man who would intimidate the bravest of souls, hugging me in the hallway as he looked over to wee Hope and said, “She is a MIGHTY WARRIOR!”  As the doctors told us, each time they felt it was a last straw, Hope would signal that she did want to keep her leg and it gave them energy to keep up the long battle.  Drs. Paley, Pinsky, and Austin decided to confer with other specialists in the area.  Within four hours of coming out of one surgery, Hope and the doctors went back into surgery yet again.

I'm ok! I can do this!

I could write pages about this ordeal, but the point is that as we look back, the doctors agree the artery was a hidden danger lurking in the background. If it had not torn then, it would have torn sometime in her life and most likely when she wasn’t already in the hospital, under anesthesia with a full staff of people intimately familiar with her leg.  I call that divine planning at its best – the moments when tragedy is used to bring triumph.

In 2012, Hope did successfully undergo her bone lengthening! It has been a

Our Mighty Warrior of Hope

grueling process. She has now been under anesthesia 26 times plus her weeks in a coma, but she maintained a positive attitude and even at four years old, she has shown amazing discernment in understanding what delayed gratification means.  She helped clean her own pins and encourages the other patients she sees.  She was walking within hours after getting her fixator on and when a boy asked how she felt, she bounced up and down and said, “I feel fine, it’s ok!”

Physical Therapy Princess Parade

Her physical therapists and staff throughout this journey have seen Hope at her best and her worst. She is remarkable and has made a huge difference in Hope’s recovery.  Hope has movement that simply shouldn’t be possible.  Drs. John and Servando never stop helping answer questions and providing for our every need.  I cannot speak highly enough about each person in the Paley Institute.   There are good days and bad, but overall we work together as a team to stay focused on the big picture and to maintain a proper perspective. We are so blessed.  Our struggles are mild compared to others and we always want to support others going through tough times.

I asked Hope if I could write her story for others, and she gave me permission. She always puts action to her words - going so far as to bravely stand with Dr. Paley in front of numerous doctors and caregivers from around the world sharing her story. He school, Jupiter Christian, has also recognized our little leader in training by giving her an award for exemplifying the character trait of "Perserverance." Romans 5:3 references perserverance as such: "And we rejoice in our suffering, suffering produces perserverance, perserverance produces character and character - hope..." Our hope is definitely well earned.  

   

Hope wants to show others that you can be happy even during sad times and you can triumph over adversity. That is the key: 1) Keep the faith that God’s promises stand even when it seems impossible. 2) Find the best for the condition you are facing – Dr. Paley is the best for limb deformities, without a doubt. 3) Be willing to exercise patience and self-control. 4) Maintain a positive outlook for your child and teach them to do the same. 5) Never stop advocating on their behalf! 6) Always look for a way to serve others and keep your own situation in the proper perspective, and finally 7) Celebrate the amazing strength of your child! How many of us could or would go into a facility day in and day out knowing the pain they will face and yet facing the challenge for the reward at the end!

I would love to be able to follow these patients into their adult lives.  Each one is a champion and a leader in training! They are outstanding!

Triumphant!

   

Kimberly
Tequesta, Florida

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