The Team That Almost Wasn’t

By: Anna Marie Jaworski

The “The Team That Almost Wasn’t” title on my robotics website is appropriate for what happened to our team (we lost a coach, three team members, our mentor and our sponsor last year when a family member became ill), but the title has an even deeper meaning if you know Alexander’s story.

Alex was born in 1994 with Hypoplastic Left Heart Syndrome (HLHS). By the time his heart defect was diagnosed, he was in congestive heart failure. He was too sick to wait for a heart transplant. He was struggling just to breathe, just to survive.

When the surgeon told us about Alexander’s condition, I wanted to run out of the room and hold him in my arms. I wanted to protect him from whatever it was that could steal him away from me. I wasn’t prepared for what I heard next.

“What would you do if it were your baby?” my mother asked the surgeon.

He ran his hand through his hair, leaned against the blackboard and sadly said, “I’d take him home and love him for whatever time I had left with him.”

That was not an option for me. I couldn’t give up on Alex. I couldn’t sentence him to certain death like that. I had to give him a chance.

“He probably won’t survive the surgery,” the surgeon continued. My father heard him say that Alex had a 5% chance to survive. I was in shock. I didn’t hear those figures. All I knew was that without surgery, he had a 0% chance to survive.

“You fix his heart,” I said to the surgeon, “And I’ll take care of the rest.”

He did. And I did.

“He probably won’t survive to the next surgery,” the surgeon predicted. “And even if he does, only 25% make it age five.”

When Alex was in the hospital there were three other HLHS children there. Christina was an infant having her Norwood when Alex had his. Nicholas was almost exactly the same age as Alex, but his heart defect had been diagnosed earlier. His Norwood was failing and he had a heart transplant the day Alex was supposed to be discharged. Joshua was having his third surgery when Alex was having his first one. These families became my first support group.

Alex and Christina were scheduled for their second surgery around the same time. Alex actually had his surgery and was discharged before Christina had her surgery. Patsy, Christina’s mom, called me at home from the hospital. “It doesn’t look good,” she said to me tearfully.

Frank watched the boys while I stuffed a few clothes in an overnight bag and left for the hospital. It took me about four hours to get there. I was too late.

Nicholas passed away some time after it was discovered that his donor heart had been the cause of the donor child’s death. It had a fatal arrhythmia associated with it that wasn’t detected until it was in Nicholas’ body. He had medications that successfully allowed him to live for over a year, but he passed away before he was two years old.

I knew that I couldn’t apply those statistics quoted by the surgeon to our tiny heart group, but I lived in fear that Alex would be next. When he turned five, I finally felt I could take a deep breath.

“The Team That Almost Wasn’t” — without Alex there never would have been an X-Bots team. Without Alex I never would have become a robotics coach. Without Alex, half of my heart would be gone.

We are all very excited our team, the X-Bots, has been invited to an international robotics tournament. We did very well at our qualifying tournament in December and even better at the state tournament in January. Yet, who would have thought that a tiny homeschool, robotics team would be invited to attend the FIRST LEGO League World Festival? It’s a dream come true for Alexander. For more information and pictures of Alex’s team throughout the years, you can visit our website: Alex has had many challenges throughout his life, but he has also had many triumphs. I hope Alex’s story gives hope to others living with congenital heart defects. From adversity can come great strength. Alexander is living proof of that.


One Response to “The Team That Almost Wasn’t”

  1. Blog Carnival: Heroes « Adventures of a Funky Heart! Says:

    […] Hearts Press Author, Editor, and Heart Mom Anna Jaworski writes about her son overcoming HLHS to become a teenage robotics wiz. I think Alex has an ulterior motive – this Cardiac Kid plans to build himself a replacement […]

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s