Outlive Yourself : Stories & Updates

Mother Of Heart Transplant Recipient Shares Story of Hope

Posted by Guest Writer

22

Jun

2017

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Our son was born in August 1998 in Anchorage, Alaska. I had a normal pregnancy with all the prenatal appointments, vitamins, and check-ups. I may have packed on a few too many pounds, but I was healthy and thrilled to be having a baby boy.

After two girls, Amanda and Samantha, I was ready to paint the house blue, buy mini football jersey’s (Go Cowboy’s!) and little baseball gloves. Shawn was born just a few days early, weighing in at 7 pounds, 3.4 oz. A perfect, beautiful boy and the love of our life.

Suddenly, our world and our hearts were shattered. At three days old, our son’s health quickly deteriorated. He was transferred to the NICU at Providence Hospital in Anchorage, the only Level III Newborn Intensive Care Unit in Alaska.

We were quietly ushered into a small office in the NICU, where we were told in hushed voices our son’s diagnosis and possible treatment options. To this day, I do not know what was said in that office. Once I heard “heart condition” - everything seemed to fade away. I could see the cardiologist, Dr. Scott Wellmann talking, but I heard nothing.

The doctors presented us with two options, the first, called the “compassionate choice”, meaning no intervention and allow him to pass away, or emergency open heart surgery. I looked over at George and he had his arms crossed in front of him, rocking back and forth, he was in shock and heartbroken. I said something like, if surgery was necessary, then that’s what we’ll do.

 We flew to Portland via Learjet, where an ambulance met us at the airport to transport us to Legacy Emanuel Children’s Hospital. We do not have a pediatric cardio-thoracic surgeon in Alaska.  Once admitted, we were told that our son was so sick and so critical, that his chances of even surviving the surgery were so small that we should prepare for our son’s death. It wasn’t until we were in Portland, that I was finally hearing and trying to process his diagnosis, an incredibly complicated heart defect, Hypo-plastic Left Heart Syndrome (HLHS) and a few other issues that created more complications.

Essentially, our little one was born with only half a heart and the half that was there didn’t work well. Shawn struggled through the first surgery and continued to struggle through more procedures but that little boy just refused to give up. The first year of his life required a lot of care and love. He had suffered a number of strokes and his little body took a beating.

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A Tough Road Ahead

We worked with many loving physical, speech, and occupational therapists, cardiologists, pediatricians, and nurses. He had undergone many minor surgeries, countless hospital admissions and a few more major open heart surgeries at Legacy Emanuel Children’s Hospital. However, in 2006 his little seven-year-old body could take no more.

Congestive heart failure and a few complications were becoming resistant to treatment and the only option to save Shawn’s life would be a heart transplant. At first, the news and decision was very matter of fact. This is what needed to happen. This is what we were going to do. But we were not prepared for what the future held for us. Shawn was listed on April 14, 2006, which was Good Friday.

And the waiting began. We moved into the Maya suites at the Ronald McDonald House at Stanford. After a year of waiting, we commiserated and often talked of home, our dogs, our friends and family. We were homesick and because we weren’t allowed to be even a few hours from the transplant hospital, which meant going back to Alaska even for a visit, wasn’t possible. However, we remained hopeful.

After two years of waiting, Shawn was no longer hopeful and began planning his own funeral. He was convinced that he would never see his home, his dogs, and his friends again because his time was running short.

A Light in Darkness 

But at 2 years, 3 months and 17 days at exactly midnight, we received THE call. Shawn, his baby sister, Haley and I were asleep at the Ronald McDonald House at Stanford when the room phone rang, and I heard, “How has Shawn been? Has he been ill?” Coming out of a deep sleep (it was midnight) I was trying to process this. “No, not sick at all!” I said, and heard, “Oh good, we have a heart for him.” 

I was overwhelmed with happiness. Would I actually see Shawn DRIVE? Have girlfriend? Graduate high school?! This was all suddenly real and very possible and it was beautiful and exciting.

 

 As blissful as that moment was, it was quickly followed by the realization that there was a family, whose lives had been tragically changed forever. As our dreams were becoming a real possibility, theirs had come to a devastating end. I didn’t know where Shawn’s heart was coming from, but my heart was with that family when I received the news. I felt sadness at their loss and utter awe at the selflessness of this family that I didn’t know.

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Shawn’s transplant went relatively smoothly. We knew at that time that the heart was coming from Southern California. We were told shortly after arriving, Shawn’s new heart began beating without any help and that the heart began pumping away immediately, and looked “beautiful”.

Initially, Shawn struggled with a number of complications post-transplant. However, like he had done his entire life, he fought with a vengeance. Shawn flew home to Alaska after 2 years, 8 months and 9 days away to see his home, his dogs, and his friends.

The Lost Letter

I knew from the day that Shawn was listed for his heart that I would want to write a letter to the family. I just didn’t know until after the transplant just HOW difficult writing this letter would be. It took me years of writing and re-writing to finally settle on the letter I would eventually send. 

After sending the letter, I didn’t receive a reply and thought that the family had received my letter and decided to remain anonymous. I believed this until the Summer of 2015 when I received a call from the Los Angeles area and the woman on the other end said she wanted to ask me about my letter. My response was, “What letter?” She went on to explain that my letter to the donor family had all of my personal contact information in it and wanted to make sure that I was comfortable giving my information to the donor family.

I was confused and asked if she was only just now receiving my letter. She let me know that she did, in fact, just receive my letter. Apparently, a hospital worker given the responsibility of sending my letter to the organ procurement center, misplaced my letter and forgot about it. When she retired, her replacement found my forgotten letter in a drawer and sent it off, not knowing that it had been there for years.

The woman from One Legacy told me she would call me back momentarily, and she did. She told me that she had called the father of the donor and that they had requested that they receive my letter as soon as possible. I choked out, “You talked to the family!?” The family that I felt in the darkness that very early morning of July 31st when the transplant doctors called me? The family I thought of with every laugh, every victory, every milestone, every happiness that Shawn experienced…you mean THAT family?

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Meeting At Last

It was surreal and the email from Kelly Bosley, mother of Carson Bosley, came later that afternoon. In the e-mail she wrote about her son, Carson, who was a 7-year-old boy who loved sports, Lego Star Wars, playing with his friends and being a big brother. I was so happy to learn that they were willing to meet us. 

I was nervous about meeting the family. I didn’t know if it would be sad, I didn’t know where they were in the grieving process, would they be resentful? I just didn’t know. But it turned out to be one of the most beautiful moments I have ever witnessed. The way that Kelly and Jamie Bosley looked at our son was full of pure love and acceptance. We spoke of Carson’s life and passing (suddenly and completely unexpected from an aneurysm) and we told them of the night we received “the call”.

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At one point, Jamie asked Shawn if he was on track to graduate high school, at which point, I asked if they would like to attend. Their response was, “We wouldn’t miss it.” And they didn’t. Shawn graduated high school on May 16, 2017. The Bosley family, Jamie, Kelly and Carson’s little sister, Quinn, flew to Alaska from Newport Beach, California, to meet Shawn’s extended family and friends and be the ones to meet him on stage and hand him his high school diploma.

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The happiness and comfort Shawn finds in his “2nd Family” is hard to describe, because it is so beautiful. In fact, as I write this in my living room in Eagle River, Alaska, Shawn is with his “2nd Family” in Newport Beach, CA spending time with them in their world.

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