Finding Miracles

One family's story of dealing with sacral agenesis, cleft lip and palate, surgeries, hospitals and miracles.

Second Lesson Learned – Service

After Zachary was born with cleft lip and palate, Scott and I were faced with getting Zachary the best medical care we could.  We had called the only doctor that specialized in Cleft lip and Palate that was in Las Vegas.  Getting off the phone with this doctor’s office, I was completely in tears.  There was no way I was going to work with this office for years.

I talked with father who suggested Shriners Hospital for Children in Los Angeles.  My father, who was a Family Court Judge, had referred a number of children to Shriner’s for medical care.  We talked with my husband’s family who indicated that they had a family member that was a Shriner, we reached out to them and asked for their assistance in getting us in to Shriners.

From the very beginning, I was completely overwhelmed but it was in a good way.  The outpouring of love, resources, kindness and attention we received for Zachary was incredible.  The doctors at Shriners are the top in their medical fields.  Zachary was first seen by Dr. Susan Kay, who in all honesty is heaven sent.  She trained doctors on the West Coast about techniques associated with cleft lip and palate.  His doctor now, Dr. McGee, is the son of the man who started Smile Train. His urologist, Dr. Andrew Freedman, is the head of pediatric urology at Cedars-Sinai. Their doctors are absolutely incredible. In addition to their education and skill, each doctor has treated Zachary with the utmost love, respect and care.

The Shriner’s motto is that “No man stands so tall as when he stoops to help a child”. This is evident in every aspect of the Shriners Hospital.

The second lesson I learned from my son was through the Shriners.  Their service to children is amazing.  They give back not just to the community around the hospital, but in other countries as well.  When was the last time we served someone else?  Often times I am so wrapped up in what’s going on with Zachary, my daughter, my family, work, that I don’t reflect on how I can help others.

I think Ghandi said it best – “The best way to find yourself is to lose yourself in the service of others.”

If I could, I would thank each and every individual who has worked to make Shriners so incredible.  I would thank every Shrine who takes time out of their days to transport patients, their wives who make pillow cases or blankets for the patients, donors who contribute so that medical care can be provided at no cost to the families, every staff member who works to provide loving and quick service, every nurse who has stayed up countless hours with Zachary and me to ease his pain and each and every doctor who diligently went to school and trained to provide the best medical care possible to kids.  Thank you.  Their service does not go unnoticed.

Shriners Hospital

What is sacral agenesis?

I am often asked, “What is sacral agenesis?”  Sacral agenesis is a birth defect where an individual is missing the bottom five (5) of their vertebrae.  These are the vertebrae that give your butt their curvature.  Zachary is missing the bottom five (5) of his vertebrae and the nerve endings that correspond with those vertebrae.  We learned that Zachary’s spinal cord is not entwined and that he simply lacks those nerve endings.  Those nerve correspond with his bladder, as well as his calf muscles.

What does that mean?  Simply put, that means that Zachary will never be able to feel when he has to go to the bathroom.  His calf muscles will never develop like our calf muscles, which has resulted in trouble walking.

When Zachary was a baby, he was born with his feet touching his shins.  Scott and I performed many exercises to help get his feet down and more relaxed because the muscles were so tight.  One surgery Zachary had was to release some of the muscles in his feet so that they would lay more normal.  As a baby, he was delayed in his ability to walk.  However, Zachary was determined to make it happen and pulled himself up and learned to walk.  We have been told that in the condition of his feet, this was a complete miracle.

At three (3) years of age, we started growing tired of failing horribly at potty training.  We took Zachary to see a urologist.  After reviewing Zachary’s x-rays, he immediately knew that Zachary had sacral agenesis.

When Zachary was in the first grade, he had extensive surgery to reset his feet.  He had been walking on the outside of his foot which was resulting in damage to the nerves in his ankles.  Our doctor, Dr. Kathryn Doughty, informed us that she needed to perform the surgery in the very near future or we would have to amputate Zachary’s lower limbs.

Last summer, Zachary had a major surgery where his urologist at Shriner’s Hospital, Dr. Andrew Freedman, gave Zachary a mitrofanoff channel and ace.  I’ll describe more about these in another blog.

Our goal as Zachary’s parents is to help him maintain a “normal” life.  We want Zachary to be as self-sufficient as he can.  At 8 years old, he was catheterizing himself.  Even now, after he had a surgery to fix some of the complications with the mitrofanoff, Zachary is catheterizing himself and wants to be in control of his medical care.

You may ask yourself, “Where is the miracle here?”  My answer . . . EVERYWHERE.  Doctors have been such a blessing and miracle to help save Zachary’s feet, the miracle that he was even able to walk as a baby, the miracle that Zachary is catheterizing himself at 8 years old.  The major miracle . . . when I googled sacral agenesis I saw others who suffered from this horrible defect who didn’t have their lower limbs and were able to be mobile using a skateboard.  We were lucky.  While Zachary may have to use a wheelchair for long distances or hang on his dad and I because he gets tired, he still has his legs, he can still walk with the assistance of leg braces, and he is still happy and amazing.

Zachary is our miracle.

First Lesson Learned

One of the first lessons I learned after Zachary was born with cleft and cleft palate was that many strangers can be more kind than our “friends”.   Through the years, I have met some incredible people who were more kind and more willing to offer words of support than our own friends.

One of the first encounters I experienced was when Zachary was only 1 month old.  My friend, whose husband was a photographer, had asked why we hadn’t had baby pictures taken yet.  She was interested to know why her husband hadn’t been asked to take pictures of our little boy.  My husband and I had discussed getting pictures taken and he and I took a number of photos of our beautiful baby and his “wide smile”.  With personal health problems that I was experiencing, we just hadn’t gotten around to getting pictures taken.  Needless to say, this friend continued to tell me that her husband wasn’t comfortable taking pictures of our little boy because he didn’t really like looking at him.  She continued on and on about how my son made her husband uncomfortable, at which time, I asked her to leave and never return.

Within days of that happening, my husband and I had taken our son to Target to get some items.  This couple who was standing in front of us at the check out counter, told us how beautiful our son was.  What a simple act of kindness that touched my heart so much and made my day.

When Zachary had major surgery on both of his feet, we were waiting for my daughter outside of her kindergarten class.  One of the kid’s dad, turned and saw Zachary in his wheelchair and casts.  This man, who was 6’4, body builder, kneeled down to Zachary and commented on what a “tough guy” Zachary was and that he would be up and playing basketball in no time.

The kindness of strangers has been overwhelming.  My heart is so touched when people give my little guy some encouraging words, or when they offer words of encouragement to me and my husband. It absolutely restores my faith in humanity.  There are such amazing people, and we are blessed to have them cross our paths.

Meet Zachary

This is my son, Zachary.  He is like any typical 9-year old little boy.  He loves Star Wars, he loves to play on the PS4, he loves to annoy his little sister and he is sweet and caring.  One thing sets him apart from other 9-year olds;  he has endured 15 surgeries so far in his short little time on earth.

Before Zachary was born, we knew that he would be born with cleft lip and palate.  My husband and I prayed continually that our son would not endure this hardship, however the Lord had a bigger plan that is slowly being revealed to us.  After researching everything that we could about cleft lip and palate babies, our special little boy came into the world.  We could not have been more in love with him.  Instantly we fell in love with his wide smile and his beautiful spirit.

This blog will discuss our course of action for his medical treatment for Zachary, the lessons we have learned from this incredible boy being in our family, and our own journey from Las Vegas to Los Angeles.

I hope you enjoy this blog and I welcome any constructive insight or thoughts.  Please feel free to email me.

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