A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Thursday, April 28, 2011

The Gift of Life

April is Autism Awareness Month. Oh, you already knew that? Right. I'm guessing that if you're here, reading this, you know a little bit about Autism and you're pretty aware. If not, you can click here and read loads of stuff I've written about the big A. But, April isn't just all blue puzzle pieces, it's also the month designated to raise awareness about Organ Donation. Yes, I talk about this a lot and you can read my previous organ donation stuff here.

Here's the short story- I have this best friend named Lisa. She had a beautiful baby girl in January 2004. Shay was born five weeks early after a completely normal, boring pregnancy. Everyone in the room waiting anxiously for her to take her first breath, hear her first cry, and breathe their own sighs of relief. That first breath didn't come. Shay was immediately put on a ventilator and taken to the NICU where she remained for ten days. She took her first breath on her own almost two weeks into her short, fragile little life. When Lisa finally got to bring her baby home, she knew there was something going on with Shay's heart, but she didn't know what- in fact, at 6 weeks, Shay was checked out by a cardiologist who didn't find anything significant. But, just 3 weeks later, Lisa brought Shay into the hospital with what she thought was pneumonia. It was not pneumonia. This tiny 2 month old baby girl was in congestive heart failure. Within an hour Lisa watched her baby girl be airlifted to another, better equipped hospital. She raced behind in her car, headed to a terrible nightmare. Shay was listed in critical condition, and after they operated on her to repair a leaky valve, they thought she'd be fine. She was not. They couldn't get her off the ventilator. After a heart cath, they found that she had restrictive cardio myopathy. Did I mention that Lisa is a nurse who has always worked in the heart cath lab? Yeah, so she understood just how dire this was. Shay would only survive if she could receive a heart transplant. That was on a Monday. By Wednesday she was placed on the list, waiting for heart to save her life. Five weeks later, just as Shay was about to be taken off of ECMO (life support), someone stopped Lisa in the hall and asked her, "Can you believe it? There's a heart!"

Miles and miles away, in Kansas, a family made the beautiful decision to give life by donating the organs of their 4 month old baby boy. His heart was rushed to Ann Arbor, Michigan and was immediately placed into Shay's tiny little chest. She remained on life support for 7 long days and nights. When I ask Lisa about the moment she knew her baby was going to live, she says, "I didn't. It was a day to day thing. Some days it still is."

When a child receives a heart at such a young age, it is certain that heart will not last more than 10 years. Shay is 7. That means she'll need another heart. Soon. Unfortunately, that means she'll have to go through the terrible process of rejecting her heart, being placed on the transplant list, and getting sicker and sicker as she gets moved "up" on the list.

And then, we wait.

We wait for another family to endure tragedy and make the decision to give the gift of life through organ donation. All that time, we'll be hoping and praying that there will be a heart for Shay; that we can watch her grow up to be a beautiful young lady and then a beautiful old lady.

Shay shows off her missing tooth

April is Donate Life month.
110, 586 people are waiting for an organ donation
18 people will die today waiting for an organ
1 organ donor can save the lives of up to 8 people

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