A Day To Remember

"I'm sorry," the doctor said, looking at me through tear-filled eyes.

"It's okay," I replied, squeezing her arm, "at least now we know what's wrong. It'll be okay." I gave her a hug, but she pulled back and blurted out, "He's probably not coming back!"

Following the gurney carrying my son down the hall, I looked over my shoulder and said, "He'll be back."

What ensued was a nightmare. After a three-hour ambulance ride we found ourselves in a pediatric intensive care unit in San Antonio, Texas. The doctor and nurses exchanged numbers, a flurry of activity followed and suddenly my baby and I were alone behind a white curtain--Alex hooked up to machines I had never even seen before, and me alone by his side.

An emergency meeting revealed that my son was in congestive heart failure. He was very ill. The doctors drew pictures of a normal heart on a chalkboard and then one of Alexander's heart. I stared with disbelief. Surely that could not be my son's heart! How could a heart like that sustain life for two months?!

The diagnosis: hypoplastic left heart syndrome (HLHS)--the leading cause of cardiac death among newborns. Left untreated, it is a death sentence. Even with treatment few children survive. I wanted to run out of the room and hold Alexander in my arms. I wanted to get away from that classroom, but I sat there senseless. I felt like I was in the Twilight Zone. Like this wasn't really even happening to me. It was all too surreal.

The surgeon told us that Alexander was too sick to wait for a heart transplant. He needed emergency surgery. Otherwise, we could just take Alexander home and love him for the time we had left. This option, called compassionate care, meant certain death. We told the surgeon to do whatever it took to save Alexander's life!

My mother and father began asking questions. They wanted to know about Alexander’s quality of life. My mother worried he would be bedbound or constantly in the hospital. They wondered if Alex would be able to walk or run and play. The surgeon made no guarantees, in fact he said most babies die before their chance for surgery and that the second highest mortality rate was the 24 hours after the first surgery. He could not guarantee Alex would live to the next surgery, or the last of the three-staged procedure. He said the last procedure had the third highest mortality rate. "But," the doctor added, "children who make to age five, tend to do okay after that."

Those were golden words.

While Alex was having his first surgery, my family and I sat in the waiting room planning the best five-year-old birthday party a two-month-old baby could ever imagine. Alex was only given a 20% chance of surviving the surgery. The doctors told us that only 25% of the children who survive the first surgery make it to five years of age. Alex would have to beat incredible odds to see his fifth birthday.

Within his first nine months Alexander’s endured two open-heart surgeries. Both times he surprised the doctors by having a remarkable recovery. Considering how sick Alex was, recovery from the first surgery was the most amazing. Alex’s body adapted so well to his modified heart that he was discharged seven days after the operation. The second surgery was more challenging. He had many complications including paralyzed vocal cords, a partially paralyzed diaphragm (requiring an oxygen tank for a month), too much fluid in his chest, air in his chest and an infection. It took two weeks for Alex to be discharged.

Then it was a case of wait and see. Would Alex’s diaphragm heal? Would he be able to talk again? Would he gain weight as a baby was supposed to? Could he stay healthy enough for his heart and lungs to grow properly? What about infections? An infection which might seem like a simple cold to an adult could be deadly to Alexander’s medically fragile body. Could he stay healthy enough to grow up?

Inspired by Alex and big brother Joey’s strength and courage exhibited throughout this ordeal, I wrote two books to help families of children with heart defects. Hypoplastic Left Heart Syndrome: A Handbook for Parents was a guide to help parents survive the ordeal my own family lived through. Seeing how the hospitalization affected Joey, and how there was nothing available for me to help him, I then wrote My Brother Needs an Operation. Joey is the hero of the book, where he tells his story of being the child left behind when a brother must go to the hospital.

Due to my books and the Internet, I befriended people the world over who cared for children with heart defects. To my dismay, many new friends had babies who did not survive the first surgery, or survived one surgery only to pass away from complications or from one of the subsequent surgeries. As time wore on the surgeon’s words haunted my dreams. "If we can just make it until Alex turns five," I remember praying silently.

Family and friends marveled at Alexander. His diaphragm healed. His vocal cords healed. He began catching up with his peers. Each and every step was a miracle to behold. Each and every milestone brought us closer to the magic number. First steps, first words, playing games, gymnastics classes, playing on the computer . . . was there no stopping this boy? Surely he would make it to age five!

One year melted into another and suddenly it arrived. This year Alex would celebrate his fifth birthday. But here we were over a thousand miles from home! My husband, a graduate student at the Gooding Institute, relocated the family right after Alex’s fourth birthday. Now there would be no family get-together as we had planned in that waiting room almost five years ago. What would we do now?

Panama City Beach is very different from where we lived in central Texas. Clearly we should have a party with a beach theme of sorts, but how could we do this on a student’s budget?

Thanks to a friend, I soon discovered how I could make Joey and Alex’s birthday one to remember for a life-time. Aboard the Sea Dragon children are carried back in time. No longer in the 1990s they are instead on a pirate ship. First their faces are painted so they all resemble pirates of yesteryear. Then a gun fight begins--water gun, that is! Out of ammunition the staff of the Sea Dragon doesn’t miss a beat. Water guns are traded in for swords and the eager mateys commence with ridding the ship of the bad pirates on board. The crew then goes into the belly of the ship where an old pirate’s tale is told with the promise of sunken treasure lingering on the horizon. Going to the deck, everyone crowds around the edges searching for the booty. Ahoy! There it is! An old chest is pulled aboard and the treasure is shared by all the good pirates. What then? Well, music and dancing of course! And let’s not forget refreshments!

Yes, this is a one-of-a-kind party. This would be a day to remember.

With my two newest books in my arms, courage in my heart, and a wish for my children, I walked to the little stand bearing The Sea Dragon and The Sea Screamer signs. Nervously I gave the books to owner, Celia Redmond. Seven year old Cody was in the booth and I observed how tenderly she looked at her son. As I told her my story, I watched compassion fill her eyes. The next day I received a phone call and a welcome to board the Sea Dragon with my two sons and their guests. When I asked her why she was being so kind to my family, she replied that she understood what it was like to have children with medical problems. Not long ago, Celia’s daughter Savannah befriended a child with cancer. Despite the parents’ and doctors’ attempts to save the little girl, she eventually passed away. This experience left quite an impression on the Redmonds.