Our son, Aidan, was born on May 22, 2008.  For most parents, their child’s story really starts to take shape from the date of birth.  For Aidan, his story began in January – four months before he was born. 

During pregnancy, week 20 marks the arrival of your “tell all” sonogram. It is when parents can find out the sex of their baby and is also when your growing child is measured and examined – from head to toe.

Perhaps it was early onset “mother’s intuition,” but during the exam, I had a very real feeling that something was wrong. At the end of the sonogram, we met with the doctor who confirmed my feeling.  He had “concerns” about the heart function and scheduled a fetal echocardiogram with a pediatric cardiologist.    The appointment was a few days later. A fetal echo was done to look at the development of the baby’s heart structure and function.  When the exam was finished, the doctor said, “Get dressed and we’ll talk across the hall.”

The next 45 minutes or so, I repeatedly said to myself, “you have to pay attention.  You can fall apart later.  Listen to what she is telling you.” The cardiologist, Dr. Donna Better, explained that our little miracle, our baby, had a condition called Hypoplastic Left Heart Syndrome (HLHS).  She told us about the surgical interventions that would be needed – three open heart surgeries in addition to cardiac catheterizations – and she also discussed success rates and outcomes.  We were consoled, educated, and set on a path that would change our lives forever.

Over the next four months, my husband and I would see my OB, a maternal fetal medicine OB, Dr. Better for repeat fetal echocardiograms, and additionally, started going to Morgan Stanley’s Children’s Hospital at Columbia Presbyterian in New York where we also saw an OB and a team of cardiologists.  We met with a genetics counselor who reviewed our family histories and explained that, like with many heart defects, there was no reason for why this condition had happened to our child.  The cause was considered to be “environmental” which simply means “this happened, and there is no specific reason as to why – it just did.”

Because our son would require open heart surgery within days of birth, we made plans to deliver at Columbia. Aidan was born in the morning of May 22, 2008.  About an hour after he was born, I was finally able to see him.  Every cliché is true about seeing your child and falling in love at first site.  Aidan, with his big eyes, was looking around, sucking on his fist. He looked perfect.  He was intubated later that day to help slow down his rapid breathing and, as a result, we were unable to hold him.  The most we could do was rub his foot, hold his hand, and just be there with him.  We were parents who had not had the opportunity to do something that is taken for granted – the chance to hold our child.  When Aidan was five days old, he underwent his first open heart surgery.

Aidan came home from the hospital when he was two and a half weeks old.  In November, at nearly six months old, Aidan had his second open heart surgery.

People say children are resilient.  My husband and I can tell from first hand experience, that this is in fact the case.  Aidan’s second surgery was performed on a Wednesday morning.  By Saturday we were pushing him around in his stroller in the lobby of the hospital for a “change of scenery.”  And by Sunday morning, four days after surgery, we were home.  Aidan was holding his bottle, laughing, and playing as if nothing had ever happened.

In April of 2011, one month before his third birthday, we found ourselves back at Columbia facing Aidan’s third surgery – The Fontan.  This was the final step in Aidan’s cardiac repair.  Note, that I call it a “repair” because his heart will never be “cured” or “fixed.”  Instead, it is “mended” and works with a special circulation – Fontan Circulation – that gives him the great chance for the best outcome.

The Fontan was the toughest surgery of the three, but that didn’t stop Aidan from showing us just how incredible his spirit is.  After a more than seven-hour surgery, when he woke, he asked to get out of bed!  His ICU nurse was so shocked that she said she had to get to work on fixing his IVs so that he would have enough tubing to move around.  Our almost three year old, dressed in Toy Story PJ bottoms, red Crocs, and a tiger hospital gown, slowly and steadily strolled down the halls of the ICU with an IV pole in toe.  This pole supported not just the necessary medicines coursing through his IV, but also towed the three collection receptacles that were attached to his chest tubes –three drains in all.  He may not have smiled while he walked, but he did it. And he did it over and over again, not because we pushed him to, but because he somehow understood that he needed to. And, on day nine of our stay, Aidan packed up his belongings and headed home!

This year marks the beginning of our next chapter in Aidan’s book; Kindergarten.  To some, this might sound strange to think of as a huge milestone, but for us, and for Aidan, it is one that lacks a quantifiable way to measure.  On January 28, 2013, we marked the fifth anniversary of having first meet with Dr. Better and learning about our unborn child’s heart.  On the very next day, January 29, 2013, he was registered for kindergarten, something we questioned, especially early on, but prayed we would see.  He has done beautifully in nursery and pre-k, so we have no doubt that he will thrive as a Kindergartener at St. Agnes, Rockville Centre.

I make it a point to tell people we meet about Aidan and his amazing heart and even more amazing spirit.  Our family knows all too well that CHDs are the number one birth defect in the world.  So logically, we know that someone else might be going through a similar situation and that having a support system in place is key.  Aidan happily tells people that he has a “broken heart because only half works” – but when he does, it is said with a wide smile that reaches his eyes, and somehow you just know, this little boy is meant for greatness.

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