Wednesday, April 22, 2009

I vividly remember the moment when Pamela came to me with the news that she was pregnant. She, very noncholontly, entered the office where I was playing on the computer. Pamela was holding a pregnancy test with a blue line across it. It took me a few seconds to realize the significance of this blue strip and what it meant for our future. We were so excited, scared and proud. All of these emotions were occurring at the same time. We were excited because we were about to start a new chapter in our lives. We were scared because we were starting a new chapter in our lives. We were proud because, in our minds, we had done it the right way. We had bought a house, gotten married, and made sure our professional lives were stable and in order before adding another human being to our family. We were ready to become caring, loving, and responsible parents.

When we finally decided the time was right to start telling our family and friends the news, we became very familiar with the usual line of questioning.

“What will you name the baby?”

“We’re not sure yet, but we’ve narrowed it down to a couple boys names and a couple girls names.”

“Are you going to find out the sex of the baby?”


“Do you have a preference of a boy or girl?”

“No, we just want our baby to be healthy.”

This was the truth. We honestly didn’t care about the sex of the child. All we wanted was a baby that would have a carefree childhood, “normal” adulthood (in hindsight, I realize that none of us have a “normal life” because a “normal life” is impossible to define) and the chance to grow old peacefully. Was this asking too much? Apparently so.

During the twenty week ultrasound, it hit me, there really was a being growing and developing in the womb of my wife. The technician showed us several shots of body parts. It was difficult for me to make out exactly what I was looking at but I knew one thing for sure, our child was on it’s way and soon we would be proud and doting parents.

The next day our lives changed forever. While at work, I got a call from Pamela. As soon as I heard her quivering voice I knew something was wrong. She told me, while holding back her tears, that something was wrong with the ultrasound and she had an appointment with the OBGYN at Maine Medical Center. We would no longer be going to Mid-Coast Hospital for services regarding our pregnancy. The night after Pamela’s appointment with the new OBGYN we sat on the couch dumbfounded, shocked and confused. “How could this have happened to us?” “We didn’t deserve this.” What are we going to do?” Pamela had been told that our baby’s heart hadn’t developed correctly. The right ventricle hadn’t grown and would never be functional. Pamela was also told that we would need to make a decision about whether or not to terminate the pregnancy. Even though we were instructed not to research our dilemma, we could not help ourselves. What we found was demoralizing. We read that children with this condition have a life expectancy of ten to twenty years, many related complications and an overall poor quality of life. This was all very difficult to read. The dream of becoming parents had turned into a nightmare.

The next day, we visited the pediatric cardiologist at Maine Medical Center. During this visit we were told that we had read the night before was not completely accurate. “Your son has hyploplastic right heart syndrome,” the cardiologist slipped (we didn’t want to know the sex of the child). “With several surgeries and lifelong monitoring he should have a chance to live a productive life,” the cardiologist told us. We asked about life expectancy and were told that it’s hard to tell because the procedures are relatively new and advancing all the time.

We were going to have a son. A son that would be debilitated throughout his life and would never be able to live an active lifestyle. How could this be? The son of a physical education teacher and college athlete father and high school varsity three sport athlete mother would never be able to enjoy the benefits of athletics or an active lifestyle.

We walked out of the cardiologists’ office with a new perspective on things. Termination of the pregnancy was never offered as an option, which was refreshing because neither of us could stand the thought of going through with that procedure. Over dinner that night, we vowed to combat the situation with optimism and love. We would raise our son with love and give him every chance and opportunity to have a decent quality of life and be a successful and productive member of society. We would also put our faith in the medical community to continue research and technique development in order to increase our son’s life expectancy.

The rest of the pregnancy went fairly routinely with the exceptions of regular visits to the cardiologist’s office for ultrasounds and an amniocentesis performed to check the development of the lungs. We had a baby shower, decorated the nursery and began preparations for the arrival of our son in earnest. The emotions of anticipation mixed with feelings of doom and dread. Were we ready to raise a handicapped child? Would he look different than other infants? How do we tell our family and friends? How long will he survive? As much as these thoughts forced themselves into our psyches, we refused to allow them to break us. Our son’s condition was what it was going to be. He was who he was going to be. We couldn’t control any of those things. All we could control was our vow to raise him with love and optimism.

On July 19th, 2007, Noah Matthew was born by caesarian section at Maine Medical Center. He cried immediately and we heard his voice for the first time. The nurses cleaned him, I was able to cut his umbilical cord and then the nurses administered the APGAR test. He scored a nine out of ten. What a beautiful baby. I was in love. The kind of love that is so powerful, it takes your breath away. If you hadn’t known Noah’s pre-existing condition, you would have never known what kind of fight he was in for. After letting Pamela see him briefly, Noah was taken from us for further testing. It would be several more days before we could hold him.

When I went to the NICU to talk to the cardiologists, I was given news that neither I nor my wife wanted to hear. Noah’s condition was more serious than expected and he would have to stay in the NICU until he could be operated on.

Noah would spend the next five days in the NICU. He was unable to eat or experience the nurturing embrace of his parents. Our only contact with him was through the isolate that he spent the first five days of his life. During these five torture filled days, we realized we had a fighter on our hands. Noah was fighting for his life from day one. Whatever the future holds for Noah, we know that he has the courage and determination to stand up to the challenges that his unfortunate condition throws at him.

After five days of watching our son from outside an isolate, we walked with the nurses while they wheeled him into the surgery room. After saying our goodbyes and I love yous, we prepared ourselves for the wait. If you have never experienced it, time seems to stand still while waiting for your child to come out of surgery. It is excruciating. You know that your little son is lying on a cold, sterile, metal table with his chest cavity open. Will the surgeon perform the procedure efficiently and effectively? Will there be complications? Will he survive? Is God watching over our little angel? These are all thoughts that race through your mind. As much as you try to remain positive, these thoughts continue to force themselves into your consciousness.After several mind numbing hours, the surgeon came to us with the news that the procedure was a success. The relief set in. We were overjoyed. Even in these first moments after learning our son had survived a major surgery, a sickening realization set in. This would not be the last time our family had to go through this terrible experience. Also, it wouldn’t get any easier.

When we arrived to the intensive care unit where Noah was recovering, we saw our precious little boy, only five days old, lying on an adult sized bed hooked up to countless machines and monitors. He was sleeping peacefully but all the while you could tell he was fighting. Noah was fighting for survival. Throughout the next couple days the lines would come off piece by piece. Finally, after almost two weeks in the hospital, Noah was going to be able to go home.

The next three months were tough. Noah was in constant pain. What a way to start your life. Even though we knew Noah was in pain and uncomfortable, he brightened our lives. Gradually, things got better. After about two and a half months, Noah was sleeping through the night, off his pain medication, visiting the Dr. less frequently and starting to develop his own wonderful little personality. Just as things started to go well for Noah, it was time for his second major surgery.

Like I said before this one was no easier. Actually, it was harder. We had fallen deeper and deeper in love with this boy and to hand him off to a stranger who would take him back to that cold, sterile, metal table was awful. Once again, Noah came through very well. We spent another week in the hospital watching young Noah recuperate from his second open chest cavity surgery in his first three months.

Nine months ago, Noah celebrated his first birthday. What a celebration it was. Pamela and I have vowed to make every one of Noah’s birthdays as special as possible. Every year of Noah’s life is a challenge and a success story. Noah is slightly delayed in his gross motor skills. Every milestone (rolling over, crawling, walking etc.) that a baby reaches seems to come just a little harder for Noah. At seventeen months, Noah is just starting to walk. He loves people. He is the type of child that brightens a room and brings joy to everyone who he meets. He has certainly brought a level of joy into our lives that I once would have thought impossible.

One day we will have to explain to Noah that he is different than other boys and girls. I do not look forward to this. I am sure he will want to know, “why me?” I am not sure I will have the answer. We will continue to raise our precious little angel with love and optimism. We are confident that Noah will continue to fight and deal with his condition to the best of his abilities. We pray that the medical community continues research and progress towards fighting congenital heart disease so our son’s lifelong struggle will not be in vain.

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