A Family, a story of “Organ Donation on both sides of the fence”

Our story begins on March 24, 2002 when our second born son, I’ll call him “Wisdom” who was a 14 year old boy, Captain of his youth hockey team, very active & had no known childhood illnesses.  On that day in March of 2002, Wisdom became ill with what we thought was an upper respiratory infection and was seen by our family Dr. and put on a 5 day antibiotic.  By the third day, our son was not getting any relief from the deep cough he had developed and was very weak and listless.  I called his Dr. to have him seen again.  A mother’s instinct is strong and I heard him in our bathroom coughing uncontrollably and moaning in a way I had never heard come from him before. After seeing the Dr., she advised us that Wisdom be sent to the Hospital for possible “dehydration”, and to get some IV fluids to remedy his symptoms. Wisdom had no strength, he barely had the strength to walk, and get into the car.  When we got to the emergency room, our son was admitted to the Pediatric Unit to be assessed.  After over 3 hours of IV fluids and nebulizer treatments, our son was not getting any better.  He complained of severe abdominal pain, and was complaining of nausea, and a rapid heart rate. The Dr. ordered a portable X-ray of our son’s chest.  After the X-ray was taken, there was a quiet stillness that filled the pediatric unit that I became acutely aware of.  I overheard a nurse outside of his room say two words ~ “Enlarged Heart”.  I called the nurse to the room, and she stated that the X-ray did show a possible enlarged heart, but that they wanted to get a clearer picture of it in the X-Ray Department.  My husband arrived by then, and lifted our son’s weak and limp like body to the X-ray table, kissing him and encouraging him to do as the doctors needed him to do.  

It was a whirlwind after the X-Ray was taken.  It was true, our son’s heart was enlarged, and now he was surrounded by a fast acting medical team; Doctors, nurses, respiratory therapists, and the pediatric cardiologist coming together at once to move our boy upstairs to be better evaluated.  Our son Wisdom ryptonite was now fighting for air and was starting to panic, which increased his respirations, making it harder for him to breathe.  I felt helpless, and I was led out of his room as the medical staff tried to calm him and give him oxygen. Our son was fighting the oxygen mask until the nurses told him that they would have to intubate him if he didn’t take the oxygen this way. Wisdom calmed down, and took the oxygen and tried to sleep.

 My husband and I were asked by the pediatric cardiologist to come and sit down to talk to us.  We sat down and the words that came next will forever be burned into our memories.  “Your son is in critical condition, he is in severe congestive heart failure, and his heart is enlarged four times its normal size.”  The cardiologist went on to say “Your son’s only chance for survival at this point is a Heart Transplant!”  The doctor went on to state “we are not a pediatric heart transplant center, so get ready, because your lives are going to change forever.”  He stated “you will have to relocate to another area that has a Pediatric Transplant Center.”

I watched the Doctor’s mouth move, and the words did not make any sense to me.  I was in shock, how could my perfectly normal 14 year old son who was just playing hockey last week be in “Congestive Heart Failure”?  The Doctor went on to explain that Wisdom had severe “Dilated Cardiomyopathy” of unknown cause.  He explained to us that a virus inside his body for a long time could have very well caused the horrible destruction of his heart.  It was also possible that it was also inherited known as “Hypotrophic Cardiomyopathy.”  We as a family would need to all be tested.  Our oldest son, I’ll call him “Peace” who was only 23 months older, 16 years old, would also need to be tested to see if he also carried a gene that could be the cause of this horrible and rare disease.  I myself was born with a congenital heart defect called “Patent Ductus Arteriosus
and it was not detected until I was 12 years old by a Doctor during a school physical.  I was operated on at the same hospital and during the surgery something went terribly wrong and I had a sudden aortic aneurysm. I was in surgery for 12 hours, and the Doctors could not stop the bleeding. That same Pediatric Cardiologist, now older, was the same Doctor present during my own life & death experience, and went on to tell a fellow working with him that I had emptied the hospital’s blood bank.  I had used 70 units of blood during my 12 hour ordeal. At last, the surgeon was able to put a graft into my aorta and the bleeding finally stopped. My parents were told I may never talk, walk, or ever be the same again because of the long period of time I was under anesthesia, and the huge amount of blood loss.  It would be 3 weeks later on my 13th Birthday that I would walk out of the hospital to go home.  After several years of follow-up by my Pediatric Doctor, it was determined that I was growing normally, and had no restrictions at all in my young teen-age years and the years following.  These memories will always be with me in detail to this day in my mind.

Within 4 hours, our son was moved to the “Pediatric ICU”.  He was surrounded by so many medical staff, sticking him with blood draws, taking orders from the Cardiologist to start a “pic line”.  In addition, he was hooked up to a cocktail of at least 8 different IV medications to keep his weak and damaged heart pumping to supply enough blood to the rest of his body.  I never left his side, only to go to the bathroom, or go to the waiting room to fall apart in pure terror and exhaustion. But fortunately, I was surrounded by many family members and friends.  For two weeks our son was in our local hospital when it became an emergency situation after he experienced a “heart attack”. He looked up at me and said “Mom, I’m going to die!”  I’ll never forget the look of terror in his eyes!!  Within seconds there were several nurses, respiratory therapists, & cardiologist running into his room.  After lab tests were drawn to determine if he had indeed experienced a heart attach, it came back clear that he had, and now his heart was even more severely damaged.  It was time to move him to a Transplant Center immediately!!!  We were flown by a Lear jet to Boston Children’s Hospital.  About a 6 hour drive, that took us only 22 minutes on a very fast jet. 

When we arrived at the Children’s Hospital in Boston, our son was immediately put through another round of testing to get a good look at his damaged heart.  We were immediately met by the Pediatric Cardiologist and head of the Pediatric Transplant Department.  She had a beautiful down to earth and calming personality, and she insisted we call her by her first name: “Betsy”!  She was worried about us, and social workers and other support staff approached us to help us navigate the whole crisis our family was now experiencing. 

It would be two weeks of extensive testing for Wisdom to go through to evaluate his other organ systems to see if he was sick enough to go on the transplant waiting list, or if he was too sick and not strong enough to survive a transplant and not be put on the list.  We found out on April 12th, that he would be placed on the “United Network of Organ Sharing” list.  He would be at the top of the list as a “Status 1A”, which meant he was in desperate need of a heart quickly.  We were given a pager by the Doctor, and told, “This could take days, weeks, or even months, to find a suitable donor that would save our son’s life.  

Twenty Six hours later, Wisdom’s cardiologist bounced into his room and sat at the end of his bed and said; Wisdom you’re not going to believe this, but we’ve found the perfect donor”! Wisdom’s first statement was of concern for another young girl “Marissa” who was in the hospital for the same condition, and he stated “What about Marissa, she’s been waiting longer than me”?  Betsy explained gently how the matching process worked, and that this heart would not match Marissa’s criteria. 

We again were numb and didn’t know how to feel at first knowing that our son was now going to go into an operating room and have his heart removed from his body and another’ person’s heart put into him to beat normally and give him a second chance at life.  After the announcement of the donor match for Wisdom the nurses on the unit were dancing, bringing balloons into his room, hugging him, hugging us.  Excitement and joy filled the unit.

We immediately called our other son “Peace” to tell him of the good news, and that if he wanted to see his brother before the surgery, he would need to get a ride to Boston to see him before he went through the surgery. Peace and an older friend drove through the night for 6 hours, but unfortunately missed the opportunity to see his brother prior to the surgery. 

The memory after this for me is very fuzzy, I remember the wonderful nursing staff & Doctor’s updating us every hour on how things were progressing.  They would say; “OK, we’ve prepared Wisdom for the new heart, but we have not removed his sick heart yet, he’s on a by-pass machine now and stable as we wait for the donor heart to arrive”.  Next update was;  “we’ve got the heart in the bucket and now we are ready to proceed to take Wisdom ‘s sick heart out and replace it with a beautiful healthy heart”.  It seemed like eternity until the next update.  The nurse came to us in the waiting room & said; “OK, they are now doing the transplant and your son is stable”, everything is going beautifully!!” The next update was a miraculous one!!  “The heart is in and now beating beautifully inside your son’s chest!!!” 

Wisdom recovered quickly, not without bumps in the road, but he did very well, and was out of the hospital within two weeks.  We stayed in the New England Area with a good friend, so that the Doctor’s could keep track of our son’s recovery, and check him three times a week at the hospital to ensure that all was going well. 

My husband was unable to stay with us in New England after our son’s surgery because of his job, and of course our older son Peace needed his Dad to be close and support one another until we returned home.  K Wisdom was given the green light to go home by his Doctors in Boston.  He was so very happy, and actually was able to attend the last week of school in the 8th Grade.  He was welcomed back home by family, many friends, and a wonderful community that ran fund-raisers to help our family get through our crisis living in two locations, with all the costs involved. 

Today, Wisdom is a 25 year old young man, healthy, happy, adventurous, and living life to the fullest!!  He will graduate from Nursing School this May ~ 2013 and will be getting married this July to the “Love of his Life”!!!  

Wisdom is our hero, and a very loving and witty, smart young man that wants to give back by working as a Nurse & future Education as a possible Nurse Practitioner.  He is a sign to others ~ a living happy young man that got a second lease on life because someone decided to go through with their loved one’s wishes and donate their organs after death, to save another human being.  The decision to donate a loved one’s organs, tissues, & corneas during the most horrific time of their life is nothing less than heroic and shows all of us that there are still more good people in the world than bad!!! 

Our family’s story does not end here in regards to “Organ Donation & Tissue Donation” 

On August 30th, 2010 I would be awoken by a knock on my front door at 2:25am.  I was asleep on my couch waiting for my oldest son “Peace” to come home safely.  He and his father had just both bought brand new Harley Davidsons!!  Peace and his father were very close, and did a lot together in life. I walked to the door to find two Deputy Sheriffs at my door.  They asked me if this was the home of Peace and I replied “Yes”.  Still asleep, and groggy, I was almost positive I had heard my son come home already, and heard him do his normal routine of getting a cold drink from the refrigerator & then hearing his footsteps going downstairs to his room.  I then thought that perhaps he had been chased by the police and was in some type of trouble.  The Deputies asked to come into my house and I said “NO”!!  I was in “Mother Lion Protective Mode” and again I was convinced my son Peace was already home, bike in the garage, and he was asleep.  The Deputies stood at my front door, and then I walked out to them, and started to feel the hair on the back of my neck stand up.  I said “Where is my son?, they just looked at me very uneasily, by then I was screaming “WHERE IS MY SON?”.  Then from the mouth of one of the Deputies came the words: “He’s at the Medical Examiner’s Office, he’s gone!!! “He crashed his motorcycle tonight into a guard-rail and was killed”!!!  I screamed “Did he suffer, oh GOD did he suffer?”  The Deputy replied “No he didn’t”.  After that I went into shock walking in circles screaming, and yelling “NO, NO, NO, NO”.  I told my husband to drive to my other son’s apartment and tell him and bring him home.  My husband did and Wisdom came home to the awful sound of grief, with its pain & moaning.

Our first born son was a beautiful gift from GOD & at the age of 5 years old picked up his Daddy’s guitar and started strumming it with precise timing, as he sang along in perfect pitch.  It wouldn’t take him long to learn many songs he would hear, and play by ear.  Peace also learned how to teach himself how to play the banjo, and harmonica, all at the sweet tender age of 5 years old.  We knew by now, that our son had a GOD given Gift of raw musical talent!!  We would often remind him of his gift from GOD.  As the years passed by, Peace played in many local bands as lead singer, and lead guitarist, he had an amazing energy on stage, and people were mesmerized by his amazing guitar leads.  As parent of a gifted musician, we became his “roadies” and we loved it! Peace also composed his own music and had his own recording studio in our basement that would soon become a legitimate recording business.  Peace just loved playing music, and many of his friends from high school went on to study music at well-known music schools, and would always come home and reunite with what they described as one of the most talented and diverse musicians they had ever played with.

When Peace left this earth, we made the decision to donate some of his tissue & his cornea’s to help others in need of life changing anatomical gifts.  Shortly after his passing, we were told that our son’s corneas had given the “Gift of Sight to two different people”! We knew Peace always gave 110% of himself in his life here on earth.  He was also an excellent savvy auto mechanic with computer skills that often would puzzle many others in the shop he worked in. Peace was humble, loving, giving, and a beautiful young man of 24 years young.  Peace touched so many hearts in his life with his music and giving ways to others. He once cut his long beautiful black hair and donated it to “Locks of Love” to give something to a sick child who had lost their hair during their sickness.

We are profoundly changed as people after the loss of our son.  We are now on “Both sides of the Fence”!!  We have now experienced both the recipient’s experience with the “Gift of Life” for our youngest son Wisdom, and the profound experience of “Giving the Gift of Life” as the parents that tragically lost a son.

We know the JOY, we know the agony!!

Recycle yourself!!!  Organ Donation saves lives!!

Kahlil Gibran – “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

About Chris Barry

I am a transplant surgeon, researcher, entrepreneur, and champion of organ donation awareness. I am particularly interested in liver cancer genomics, fatty liver disease, and saving lives through transplant and organ donation awareness.
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