After moving to Tampa, I met an inspiring mom named Michele Gotro, a neighbor and a nurse anesthetist. Michele shared with me that one of her twin boys, Andrew, was diagnosed in utero with multiple heart defects. As a parent, I just could not imagine being faced with such frightening news. She explained to me how little funding there is for Congenital Heart Disease (CHD) and I immediately wondered how I could help. I asked Michele how she would feel about me taking some photos of her boys and telling her story. She admitted to me this was incredibly hard for her to put into words, but very much wanted to share her very personal story in hopes to bring more awareness to Congenital Heart Disease, which is 60 times more prevalent than childhood cancer:
“After many years of struggling with infertility and several unsuccessful IVF attempts, I received the best news I could’ve imagined. I found out I was pregnant! When the nurse called with the news I laughed and cried out of pure joy. A few weeks later I learned I was having twins and I couldn’t have been happier. My pregnancy was going perfectly and at my 16 week appointment I learned I was having 2 boys. The very next week, August 24, 2012, I went to the perinatologist for a level 2 ultrasound and anatomy scan. While I didn’t know it yet, this would be the day that turned my world upside down. The sonographer was measuring each baby and checking every organ thoroughly, she confirmed it was in fact 2 boys. As she began looking at baby b’s heart I could tell something was wrong by her expressionless face. She left the room and returned with the doctor and it was at that moment I knew something was very wrong. All it took was those seven words to change my life. Seven words which broke my heart and shattered my dreams. “Theres something wrong with the baby’s heart.” In that moment I felt pain stronger than I’d ever known before. I was breathless and my heart ached. I don’t remember exactly what he said, but I knew these defects were serious and required open heart surgery at birth. I left the office and cried the rest of the day. I was scared, devastated, felt helpless, sad, and angry.
Why was this happening to me and my baby? I wondered if I had done something to cause this? I already loved these babies and the thought of losing him (them) was unimaginable.
A couple weeks later I went to the pediatric cardiologist and had a fetal echocardiogram. The doctor confirmed the diagnosis. The baby had a large VSD (Ventricular Septal Defect), coarctation of the aorta, and subaortic stenosis. As we were walking out of the hospital that day we decided his name would be Andrew, which means "strong/warrior." This baby had the fight of his life ahead of him and he needed a strong name.
With each new appointment came more ups and downs. I knew this was just the beginning of this roller coaster ride. I spent the rest of my pregnancy worrying. I lived with the fear every day that he may not survive. As these thoughts entered my head I’d quickly tell myself that’s not even an option and try to think of something else. It was very difficult to plan and shop for baby things. These should’ve been fun and happy times that I felt were taken from me. I knew they were safe as long as they were still inside me, so that’s what I focused on. I think I was somewhat in denial towards the end of my pregnancy. I didn’t have bags packed because I don’t think I was emotionally ready for all that would happen once they arrived.
On December 26, 2012 my husband and I went to what would be our last prenatal appointment (with no bags). The doctor decided it was time to deliver! What?! I wasn’t ready, but ready or not, I was admitted to the hospital and prepped for surgery. Everything was happening very fast. They wanted to deliver the boys early in the day so all the teams of doctor’s were available. I was taken into the operating and was surrounded by doctor’s and nurses. It was all very overwhelming. I cried harder each time someone new came to speak to me about what was about to happen. I was so very scared. A part of me was excited to meet these little guys I had been waiting so long for, but the other part of me was terrified. I didn’t know what to expect. My husband was finally brought in and just a few minutes later both babies were born and both were crying. It was the best sound I’d ever heard. They were taken by their assigned teams and examined. The neonatologist came over to tell me that both babies looked and good and baby b was breathing his on his own. I was able to get a quick peek at them and then they were taken away. My husband went with Andrew to the NICU while Dylan was taken to the nursery. I was left there alone left to wonder and worry about what was happening. I only saw them for a second but they were perfect and I was deeply in love.
Sometime later that day I was brought to my room where I could be with Dylan. I remember just starring at him but my heart was half empty. A little bit later my nurse took me to the NICU to see Andrew. He had so many lines and monitors. He was absolutely perfect with an imperfect heart. How could he look so perfect on the outside and have so many defects of his heart? The doctor’s confirmed the previous diagnosis and added to it. In addition to his VSD, coarcatation of the aorta and subaortic stenosis, he also had a hypoplastic aortic arch and a dysplastic aortic valve. He was stable so it was decided to wait a couple weeks for surgery as to allow his brain to develop more. This is when I became a “Heart Mom.”
Dylan and I were discharged from the hospital on December 28th. As we are being wheeled down the hallway of the hospital, I have tears streaming down my face. I’m being forced to leave with only one of my babies. The next weeks were filled with back and forth trips from home to hospital trying to split my time with them.
January 17, 2013 was the day Andrew was scheduled for surgery. We went to the hospital at 3 am that morning so we could spend more time with him. We took turns holding him for a couple hours. I remember starring at him, thinking how perfect he looked, and held my hand over his chest knowing this would be the last time I would see it with out a scar. I don’t think we really spoke to each other during that time. I prayed like I had never prayed before. I haven’t had enough time to get to know him yet. I now had to hand my baby to a surgeon, knowing he will open his chest and stop his heart, and pray that he will give him back to me alive. That was the hardest day of my life. Once they took him we were escorted to the surgery waiting area. In that moment, I felt fear colder and stronger than I’d ever known before. Again, I had those thoughts enter my head. What if….and I had to quickly say no that’s not an option. The surgery was about 6 hours long and I think I sat and watched every second tic by on the clock, clinging onto every phone call and update from the nurse. At around 1:30 the nurse came and told us he was off bypass and they were closing his chest and we could see him in a couple hours. We finally were called in to the ICU to see him and I was relieved he was alive, but it was a hard sight to see. He was hooked to so many lines, medications, and machines. His room was filled with doctors and nurses. They were doing an echo and it didn’t look good. He was bleeding around his heart which was preventing his heart from functioning normally. They warned us they may have to open him up again. We sat there and cried. Things were not getting worse so they decided to watch and wait. The next morning as they were doing another echo everyone was amazed. All the blood that was around his heart was gone. I remember one nurse say, “He’s a rock star.” The next days were filled with ups and downs. He would take a step forward and then a few steps back.
When my mind wandered to dark places, I had to immediately remind myself that I was not leaving the hospital without my baby. He would come home with me, there was no other option. He was finally extubated 8 days after surgery. Hearing him cry was the most amazing sound and I was also able to hold him…I never wanted to let go. I’d been wanting to bring home so badly. I spent 15 hours a day in the hospital (as did my husband) and spent the nights at home Dylan. My mom spent every night in hospital with Andrew (so he wouldn't have to spend one second alone), and my aunt came to stay with us to help take care of Dylan. I'm very blessed to have such a wonderful family, I could not have done this with out them. This was such a difficult time, I felt I wasn’t able to bond with either of them and just couldn’t wait for the day we were all home together. The morning of January 26, 2013, ten days after surgery they came in during rounds and said he could go home. This was great news, but I was scared, too. When we arrived home I layed in bed with both of them and fell asleep (I think this was the first time I truly slept since they born).
Andrew is now almost 4 years and is doing great! When he was 2 years old he had to have a cardiac catheterization and another open heart surgery for the development of a subaortic membrane. He flew through surgery with flying colors. Despite his rough start, we now have two happy, healthy, energetic boys on our hands! We know there is more surgery in his future, but we live each moment as they come. While this is not the life I would’ve chosen for my family, I wouldn’t change a thing. Of course if I could take away his pain or struggles, I would in a heartbeat. I believe he was given to me for a reason. He has changed me and made a better person, and has taught me so much about courage and strength and love. He is perfect to me and I wouldn’t change him for the world. He has made us so proud to be his parents. He is strong and brave, and truly a miracle….he is my “heart hero.”
**Nearly 1 in 100 babies are born each year with Congenital Heart Disease (CHD), and about 1 in 4 are considered critical CHD and will require heart surgery or their intervention in order to survive. There is no cure for CHD, it is often a lifelong condition requiring multiple surgeries or interventions. In most cases the cause for CHD are unknown. The American Heart Association says nearly twice as many children die from CHD than from all forms of childhood cancers. CHD is 60 times more prevalent than childhood cancer and yet funding for pediatric cancer is 5 times higher than funding for CHD.
To read more about CHD or to make a donation, please visit www.childrensheartfoundation.org.
Andrew is wearing the navy polo and was given the red cape by “Heart Heroes.” You can see his “battle scars,” as his mama calls them, in the last photo.