Wednesday, February 9, 2011

Lump In My Throat

I am amazed. Touched. In awe. One tiny boy touched so many lives and changed people. He brought a face to heart defects, strength, and hope, and showed people what it was like to fight with everything inside of him. He taught me how to live every moment like it was my last and to fill my life with LIFE.

I didn't fully understand the definition of stubborn until he showed me. I didn't understand how to fill a room with a glow of happiness until I saw his smile. We worked hard for that first smile. It didn't come naturally, it came out of hard work and building trust. Nothing he ever did came easily except the fight inside him to accomplish anything and everything.

My SON. Tommy.

I rode the roller coaster of my pregnancy, knowing that he would be born sick and would need surgery. I had never seen a person go through heart surgery, much less a baby. My baby, who weighed barely 5 pounds and who's heart was a big as a grape. I thought I was all alone in the world. I could have never been so wrong.

I began my journey with congenital heart defects with the results of a fetal echocardiogram and the soft spoken, but firm words of Dr. Shirali. He told me my son could NOT be born premature. He needed to be strong to survive. He gave me the option of termination. I had about three weeks to decide, and to be frank, I thought about it. I had no idea what a child with a heart defect would be like, but I felt like God had chosen me and from that moment on, it was no longer about me, but my son. I took on a "gotta do what I gotta do" mentality. It didn't matter that I was scared, worried, frustrated or nervous. I threw it all away, sucked it up and faced it head on. I had no idea what I was facing.

Tommy would be born premature, but the second he entered this world, he came out fighting. I didn't know what to expect. He was 7 1/2 weeks early and his heart was missing parts. The last thing I expected to hear was the loudest, most stubborn, lusty cry coming from that tiny creature! I cherish the memory. I would not hear him cry again for a year and a half.

Tommy never did what the textbooks said. Ever. Then again, neither did I. When I was told Tommy needed a trach and one of his doctors mentioned an MRI to rule out why he couldn't swallow, I did the research on my own and figured out what they suspected. I refused to give consent and had Tommy's nurse call the neurologist so I could find out why he hadn't had the MRI yet. He asked me who had told me about the syndrome I mentioned to him. I told him "nobody, but I'm right that what's you're looking for, correct?". There was a pause and a confused "yesss". I'm guessing he wasn't used to the mommies knowing such big words! Five minutes later, a certain cardiothorasic surgeon was on the phone with me wanting to know why I was refusing consent and why was neurology calling him? I told him my concerns and he laid down his with me. For the first time, I had fought for my son and shown the doctors I was the boss, not them. Only after I was confident that the trach was best, did I give consent. He also had his MRI by the end of the week. He didn't have the syndrome, which only perplexed everyone even more.

That small child taught me so much about what I had deep down inside me. After his first heart surgery, I was finally allowed to see him. I had no idea what I would see. He was covered to his neck with a blanket. I was told his chest was swollen and still open, covered by a protective film. My child might not live through the night.. I wanted to see. To this day, I will never forget seeing his heart beating. SEEING the movement of his heart beating inside his body. I thought to myself if he is strong enough to live through this, then so am I.

People used to tell me how sad it was to have such a sick child. He must be so upset to get stuck all the time, to be in the hospital, to breathe with a trach. I would tell them he's never known any differently, so why would he be sad about it? As far as he knows, everyone breathes through their neck and is missing part of their heart. That got people thinking that life may not be as bad as they thought it might be. If Tommy could do something despite every challenge he faced, then why couldn't I?

I don't know if I was born strong, but he brought it out in me. I faced things I never imagined. I faced his mortality well before he ever died. When he was 9 months old and we were told his lung pressures were too high to proceed with his next heart surgery, we were told to take him home. His oxygen saturation was already in the 60s. He was blue and tired. The DME came with oxygen and got all the paperwork in order to release him. We were basically told there was nothing that could be done and he just needed to go home and grow. There was no way I was letting them discharge him. I sat sweetly beside his bed every day for 4 days. On day 2, they moved his crib to a private room so his primo spot could go to a baby returning from surgery and could be right next to the nurse's station. Fine by me. It meant I had a tv to watch between naps. By day 4, his surgeon had formulated a plan. I think he was tired of seeing me every morning when he rounded. He also knew from our past that I wasn't moving from that room until somebody fixed my baby.

I'm beginning to wonder if the stubborn came from necessity, or heredity. I'm seeing my son and I were more alike than I realized. If he were alive today, I also think he would have a blue Mohawk to go with my pink hair. God, I miss that kid.

He made me who I am today. A small boy with a broken heart reached out and touched the world with his smile. I am proud to be his mother. I am honored he was my son. His short life had a ripple effect on the world. So long ago, when I felt like I was the only person in the world with a baby with a heart defect, I turned on my computer and started looking for others like me. I found out there was another planet!

To be told having a heart defect was a rare event was not true. The media, the internet, and many organizations have sugar coated CHD. An average of 87 babies are born EVERY DAY with a heart defect. It is the number one birth defect in the country and it takes more lives in the first year that all forms of childhood cancer combined. Tommy has a lot of company in Heaven.

As I continue my journey as the parent of a child who has lost his battle with heart defects, I want to be just as stubborn as I was when was an advocate for him when he was alive. It angers me that everyone is looking for the gold at the end of the rainbow. To get to the end of the rainbow, we need to walk in the rain. The prettiest rainbows come after the harshest storms and I'm looking to pick a fight with the biggest thundercloud out there. We need to stop sugar coating what life if like with a CHD! It's hard, it's stressful, it's sleepless nights. Some fortunate parents are able to have their child repaired with a simple procedure, medication or just time. More of us face multiple surgeries, brushes with death, fear of infection, growth issues, behavioral issues, transplant, and eventually funerals. It's not pretty.

CHD needs awareness, yes, but it needs funding and research. Statistics show that deaths from CHD have declined by 39% between 1979 and 1997, but 41,000 still died as a result of a CHD during that same study. Current statistics show 4000 babies die a year from CHD. The average number of people living with a CHD at this time is about 1 in 100. About 87 babies are born a day with CHD. By the time you end your day today, 9 of those families will be planning a funeral and crying with empty arms. Don't think it can't or won't happen. I'm still crying.

No comments:

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries