Sunday, December 21, 2008

Ten-Year-Old Heart Transplant Patient Shawn Stockwell Set To Return Home To Eagle River, Alaska After Three Years Medical Treatment In California

Update December 23rd: Shawn Stockwell now back in Alaska. Report with video by KTUU Channel 2.

The nearly three-year odyssey that took an Eagle River boy to California in search of a new heart may finally end successfully just before Christmas. Ten-year-old Shawn Stockwell, who struggled to survive the after-effects of a long-awaited heart transplant, is set to return to Alaska as early as Tuesday December 23rd. Primary media story in the Anchorage Daily News.

Shawn basically was born with half of a heart. It's a birth-defect known as hypoplastic left heart syndrome, and he required six major heart surgeries before turning six. In addition, five years ago, he was also diagnosed with protein losing enteropathy (PLE), a protein-depleting disease that starves the body of the fuel required to maintain body weight. His family was told that the mortality rate of PLE victims with severe cardiac problems is high, but a successful heart transplant could eliminate the disease altogether.

So in April 2006, while his father, George Stockwell, continued to work in Eagle River (thereby maintaining his medical insurance), Shawn and his mom and two of his three sisters relocated to Palo Alto, moving into the Ronald McDonald House. They expected to remain there only for about six months until a suitably sized donor heart of the appropriate blood type became available. But a year went by, then two, and Shawn was eventually recognized as the longest-waiting organ-donor recipient at the residence.

An August 1st, 2008 article in the Anchorage Daily News further explains the delay. When Shawn first arrived at the Lucille Packard Children's Hospital at Stanford University, he was the only kid in line waiting for a heart transplant. But he couldn't get the very next heart available, unless it was from a donor who also had O-type blood, and whose heart was the same size as Shawn's. This narrowed the donor field down to the 6- to 10-year-old age range.

As the time progressed, size alone ruled out Shawn as a recipient of a succession of donor hearts that became available. In addition, other heart-transplant candidates arrived who were in much more critical condition. Priority is also determined by criticality. Then in July, success. A seven-year-old boy who lived in Southern California was killed in a car accident. As a registered organ donor, his heart was carefully extracted and rushed to Palo Alto. A few hours later, thanks to the Lucile Packard cardiology team, it was beating inside Shawn's chest.

But then a new problem arose - rejection. Shawn launched into a three-month-long roller-coaster cycle of feeling OK, then dangerously ill, with an irregular heart beat and difficulty breathing. Finally, doctors stabilized Shawn with a news anti-rejection drug to combat cardiac arrest. In addition, they performed a risky blood-washing therapy called plasmapheresis to suppress his body's rejection of the new organ. This helped sufficiently to allow Shawn to be released from the hospital and allowed to return to Ronald McDonald House.

But two days later, crisis struck again. Shawn suffered a seizure and was rushed back in. An MRI revealed bleeding in his brain. After stabilization, the doctors diagnosed the episode as something neurologists call Posterior Reversible Encephalopathy Syndrome, or PRES. But the experience left Shawn feeling wobbly, with blurry vision and a slight degree of memory loss. Tracing the cause of the problem to a bad reaction to cyclosporin, his anti-rejection medication, his doctors switched him to a new drug.

Again he recovered and in early October Shawn was released from the hospital a second time. Less than a week later, however, he suffered his second PRES episode -- this time with a far more violent seizure that left some scarring on the back of his brain. However, his doctors found another anti-rejection drug, predisone, that his body doesn't fight against, and Shawn started recovering for keeps.

On the day before Halloween, Shawn was discharged from Lucile Packard for the third and hopefully final time. Since then he's gained weight under the influence of the predisone and slowly grown more active, taking walks, climbing stairs, growing more adventurous. But he's still suffering some temporary side-effects of the anti-rejection drug, primarily bloating.

Shawn's days have been filled with physical therapy sessions for brain trauma and kidney damage as well as his heart transplant. That regimen will continue for the foreseeable future. And after the holidays, he'll still have to return to Lucile Packard in early January, then at least once a month for the next half year.

But right now all he's thinking about is hugging his dog, examining his old bedroom, then looking up Austin, his very best friend. And he's also looking forward to Christmas.

Even though the family has health insurance, it obviously wasn't enough. In May 2008, the Eagle River community opened their hearts - and their wallets - for this family. A fund raising campaign led by the Eagle River Lions netted $25,000.

Additional media stories of interest documenting Shawn Stockwell's struggle:

-- KTUU Channel 2: A Heart for ... 12/19/06
-- KTUU Channel 2: Child still waiting for heart transplant 04/23/07
-- Alaska Star - News: Shawn Stockwell gets heart transplant 07/31/08
-- Anchorage Daily News: Eagle River boy receives new heart 08/02/08
-- Palo Alto (CA) Weekly: After two-year wait, Shaun Stockwell gets a new heart 8/13/08
-- Anchorage Daily News: Heart transplant recipient in critical condition 08/15/08
-- Alaska Star - News: Shawn Stockwell fights heart rejection, kidney 08/21/08
-- Alaska Star: Stockwells to have a merry little Christmas 12/18/08


  1. Shawn Stockwell was very lucky to get a heart transplant. Over half of the 100,000+ Americans on the national waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of their neighbors die every year as a result.

    There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.

    Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't prepared to share the gift of life should go to the back of the transplant waiting list as long as there is a shortage of organs.

    Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

  2. I just wanted to say my name is Jamie Hall iam 35yrs. old and have had my new heart for 18 1/2yrs. now. I too went through a far amount of rejection, it took doctors a few years to figure out the rite cocktail for me but the did and I have been rejection free for a while now. Be patient they will figure things out and all will well. My thoughts and prayers are with you, and I hope all gets better and stays better : ) Jamie Hall hearttransplant 217 O.H.S.U. May-6-1993