“Your son is in heart failure.”

Bill was born with Hypoplastic Left Heart Syndrome in 1989. In those days, HLHS was practically a death sentence.  The best chance for survival involved securing a heart transplant within the first few weeks of life.  With only hours left to live, a donor heart came available, and Bill went on to live a childhood that was “colorful, carefree, and filled with innocent bliss.”  But at age 20, his transplanted heart along with his kidneys began to fail.  If he wanted to live, he would have to fight with every ounce of his being.

Bill does not sugarcoat the experience. Be prepared– the battle to stay alive when your body is failing can unleash anger and behavior that is explosive, rebellious, and desperate.  Swim is an uncensored, intimate account marked by psychological highs and lows.

As his condition deteriorated and his need for transplant became urgent, Bill wrote, “…I do believe that everything happens for a reason, but whenever I get down I start to wonder why I was born with a defective heart as an infant.  What made God choose me?”  As I read that passage, I could not help but feel that God knew Bill would write about his experiences.  When you close this book, you will appreciate life and understand profoundly the importance of organ donation.

Swim:  A Memoir of Survival is available as a quality paperback on Amazon or it may be purchased electronically for Kindle.  Signed copies can be purchased on the author’s website, www.BillCoonBooks.com.

Are you ready to SWIM?

Colleen is awaiting test results on her son, Tommy, who has recently received a heart transplant.  Doctors are testing for possible cellular rejection and should know if this is the problem by tomorrow.  Tommy has been returned to PICU; his family is understandably distressed.

Also, remember the family of Lindsay Dean, born last year with HLHS or Hypoplastic Left Heart Syndrome.  Little Lindsay received a new heart earlier this month, but her heart stopped yesterday morning.  She has been placed on ECMO.  Pray for her and parents, JR and Suzie Dean.  [Posted June 16, 2009]  Update:  Lindsey is home!  Follow her progress at http://lindsaysheart.blogspot.com/.

My friend, Donna Miller, is requesting prayer for 9-year-old Hunter, son of her colleague, Cheryl.  Hunter, born with pulmonary hypertension, is autistic and has ADHD. “Hunter has recently developed a ‘butterfly’ rash which is a sign of Lupus,” Donna says.  “They are seeing a Rheumatologist on Monday at Tulane.”  [Posted June 18, 2009]

Pray for three-year-old Brooklyn Keller.  She was rushed to Forrest General Hospital in Hattiesburg with high fever and an abnormal blood count.  [Posted June 23, 2009]

Dr. Edward Bove is experienced in the treatment of complex congenital heart defects.

When faced with a complicated congenital heart defect, confidence in the skill and expertise of your child’s surgeon is of paramount importance.  When our son, Nathan, was diagnosed with Scimitar Syndrome, a rare condition characterized by dextrocardia, pulmonary hypoplasia, and Partial Anomalous Pulmonary Venous Return, we soon learned that our local surgeons had no personal experience performing the required repair.  After reviewing Nathan’s medical records, the closest doctor with a successful surgery under his belt was not willing to proceed due to the “severe rotation of the heart.”

There was tremendous anxiety in our household as we considered our options.  Do we allow a willing doctor to perform the surgical correction even though this would be his first attempt?  Or do we continue to search for a doctor skilled in correcting this rare CHD, possibly allowing Nathan’s heart to weaken in the passing months?

Thankfully, I came into possession of Michael Ruhlman’s book, Walk on Water:  Inside an Elite Pediatric Surgical Unit, which documents Dr. Roger Mee’s dynamic team at Cleveland Clinic in Ohio.  Mee, I discovered (to my initial chagrin), had retired, but the name of another “Walk on Water” surgeon caught my attention–Dr. Edward Bove.

I described our son’s condition to him via email, and was thrilled when he quickly and graciously wrote back that he “would be honored to evaluate” our son for surgery.  Bryan and I were extremely impressed with his credentials.  He had an 85% success rate with Hypoplastic Left Heart Syndrome, a complex condition requiring a series of three surgeries in order to transform half of a heart into a functional heart.  After reviewing Nathan’s medical records, he called one day to inform us that he would perform the surgery.  I took down the necessary appointment information, thanked him, hung up the phone…and shook for the next few minutes, in the grips of an odd combination of joy and terror.

In July of 2006, our family of seven boarded a plane in Hurricane Katrina-ravaged Gulfport, Mississippi, and flew to Ann Arbor, Michigan.  At the C.S. Mott Children’s Hospital, University of Michigan Medical Center, Dr. Edward Bove constructed a baffle out of Nathan’s own pericardium to tunnel through the right atrium to the left atrium, successfully rerouting oxygenated blood to the correct chamber.  That’s not even a Reader’s Digest Condensed version of the story, but suffice it to say, we will forever be grateful to Dr. Bove and his team at C.S. Mott.