Kobe is a fun-loving, typical 7-year-old. However, his story isn’t like most of the kids’ his age. Kobe has received not one, but two heart transplants which saved his life. His parent’s share his story.
Being a parent was nothing new to Shane and Karmen Giesen, parents of three young children, that when their 3-month-old son’s appetite began to diminish, they had a nagging feeling that something wasn’t right. A trip to the physician turned into a trip to the local pediatric cardiologist who delivered the shocking news that Kobe was in heart failure.
On January 5, 2007, the Giessens were given the diagnosis: dilated cardiomyopathy, a disease in which the heart muscle becomes weak and the heart chamber enlarge.
“On that first day in the hospital, we were told that Kobe might need a heart transplant…someday,” says Shane.
The Battle Begins
Kobe’s heart was two times the normal size, and he was very weak. And in April 2008, Kobe was unable to bounce back from pneumonia, and by early June he was in severe heart failure.
His ejection fraction – a measurement of how much blood is pumped out of a filled ventricle – became dangerously low, physicians in Fargo arranged for him to be airlifted to Mayo Clinic, in Rochester.
The next day it was apparent that someday was sooner than Shane and Karmen could have ever imagined, and Kobe was listed for a heart transplant.
His condition continued to worsen each and every day, and on June 13, Kobe had an adverse reaction to his medication and also had a stroke, which affected his left side. The Giesens began preparing themselves to say goodbye.
On Father’s Day in 2008, the news came that there was a heart available in Texas. Although the heart was damaged as a result of resuscitation efforts, it was something Kobe’s parents couldn’t turn down.
Surgery started at about 9 pm, and it wasn’t until 2:30 am that Shane and Karmen spoke with Dr. Dearani – Kobe’s surgeon. Unfortunately, the new heart had an ejection fraction that was nearly the same as Kobe’s own heart.
“It’s hard to ask God for an organ for your child when you know another family went through the loss of their child,” says Karmen. “You feel hopeless and numb. You do lots of waiting. Even when you get the call that an organ is available, the team sent to recover may decide it’s not viable once they see it. Then you wait again.”
Fortunately for Kobe, they didn’t wait long. With time running out, there was a call that another heart was available. Kobe was in rough shape, but his family decided to go ahead with a second surgery.
“Dr. Dearani said the new heart started beating immediately on its own and fit in Kobe’s chest as though it were made for him,” recalls Shane. “When we saw our son at 4 am, there were fewer tubes in place and no heart-lung machine.”
In the days following, Karmen learned how to care for Kobe at home, including managing his immunosuppressant drugs and other medications, diet and activity. She also attended a transplant support group for parents while staying at the local Ronald McDonald House.
“Through the support meetings, I met a women whose daughter had died, and she described how their family had decided to donate her daughter’s organs,” notes Karmen. “She said this actually helped their family in the healing process. This was good to hear.”
Defying the Odds
Kobe truly defied the odds. He survived not one, but two heart transplant surgeries – the second just three days after the first.
His family has been faced with not only the difficulties of life after transplant, but also with the fact that Kobe could not move his entire left side from his stroke. He has been receiving occupational therapy, physical therapy and speech therapy ever since. To this day, his left side is much weaker than his right.
The Gift of Life
Someone’s decisions to #DonateLife saved his life. When asked, “How has someone’s decision to be an organ donor impacted your family,” Karmen replied with the following answer.
“Without the gift of life, we would not have had the chance of the last five years with our son. We think about the donor families every day.”
Stories like these show the impact a simple choice like registering to become an organ donor can have on someone else’s life. Help us spread awareness for organ donation on November 23 in Fargo at the #GivetoLive Challenge and share the Giesen’s amazing story.