by Susan Friesen (copyright 2005)

My husband, Ken, and I are proud parents of five children. Our two eldest children are athletic young men, David, twenty-two, a U.S Marine, and Glenn, twenty-one, a lifeguard and college student. We were pleasantly surprised when I became pregnant with Shivan almost eleven years after Glenn's advent into the world. I prayed we'd have another child, so Shivan wouldn't feel like an only child. Imagine my surprise when Alaina arrived a little over a year later, then Lindsea not too long after that. So, with one son entering college and another a sophomore in high school, we found ourselves with a couple of toddlers and a preschooler to raise, as well.

The girls were very healthy, as our sons had been throughout childhood. Shivan was born with a heart murmur that supposedly closed by age two. We were told not to worry about heart problems with Shivan, only to make sure when she began dental cleanings to take an antibiotic before and after treatments.

Dr. Bilal Harake performed an echocardiogram which showed Shivan had only about seven percent of typical heart function. A heart transplant must happen if she would survive. We waited about three-and-a-half months for Shivan to receive the gift of life on January 29, 2001. Doctors told us it looked like a virus had attacked Shivan's heart. We were told it didn't look like familial cardiomyopathy (genetically caused), but dilated idiopathic cardiomyopathy (viral-based).

Once home after all the follow-up heart biopsies at UCLA Medical Center, we thought life would get back to semi-"normal." We knew, though, that life would never be the same, as Shivan's pill case was filled with lots of pills she had to take three times a day. She'd have to take immune-suppression drugs the rest of her life.

A couple years went by. Lindsea got sick in early October with a flu that kept recurring. A flu bug rippled through the community at that time, so the pediatrician just said to let the flu take its course. It stopped, but started-up again. My husband's face literally whitened when he noticed the same bloated look and puffy abdomen. Amazingly, Lindsea fell ill the first Friday in October – the same timeframe as Shivan, when a doctor declared she needed a transplant. An ambulance arrived at Marian Medical Center to transport Lindsea to UCLA.

Lightning does strike twice. Unlike Shivan, Lindsea couldn't wait outside the ICU for her new heart. A large blood clot barely clung to her ventricle. She had to remain bedfast in the ICU. She waited forty-nine days for her heart and it was a perfect fit, thank God. Dr. Mark Plunkett, UCLA transplant surgeon, possesses, it seems, angelic hands.

We've been told that having two daughters with a successful heart transplant exceptionally rare, a one-in-ten-million situation. Now that two girls fell ill to a similar condition, it seems their heart disease is genetic, but we've been told nothing for certain. We don't even know the girls' diagnosis, but doctors are looking into this. Baylor University in Texas is involved in a study of cardiomyopathy and we’ve provided the girls’ blood samples.

Genetics is still a relatively new science. Even though the human genome has been mapped, researchers still work relentlessly to discover genetic markers that may give us a clue to what happened to our daughters.

Because of the unselfishness of heart donor families, our girls received sound, healthy hearts. All three of our daughters work hard at their homeschooling lessons. They love creative writing, illustration, and reading. Lindsea and Shivan are excited to take part this year in the World Transplant Games in London, Ontario, Canada. They’ll compete in swimming, track (50 yard dash), badminton, and five pin bowling (Canadian-style bowling). We are so proud of all our kids!

If you have any questions about organ donation or heart transplantation, feel free to write:
Susan Friesen

dolphin_dancer@comcast.net
See websites:
http://www.ken-sue.com/
http://www.2hearts.org.uk/children/sisters.htm
http://www.geocities.com/susanfriesen_99/Shivan.html