Aidan James's Memorial

Submitted By: Anne Domzalski

Candles Lit: 214

About Aidan James

We found out we were expecting our second child in August of 2008. We were overjoyed to be having a second child together, and to be giving our daughter Erin a sibling. The pregnancy was normal and uneventful until October of 2008, when we went for a routine ultrasound. The ultrasound started out wonderfully, we were excited to see our little baby and find out that we were expecting a boy. When the technician spent a lot of time looking at our baby's heart, however, I began to worry a bit. She didn't say anything, and left the room. The doctor came in a few moments later, and my heart sank when he immediately inquired about the health of our daughter, and brought up the images of the baby's heart. He silently looked at the ultrasound for what felt like an eternity until Jason finally asked him if everything was okay. All he said was "We have some problems." He said it so coldly and to the point, I immediately started crying. He told us our son had a heart defect, and referred us to a pediatric cardiologist for a fetal echocardiogram, a more detailed ultrasound of the baby's heart. He wouldn't give us any details as to what defect our son had, and it was an agonizing two weeks until our cardiologist's appointment. At that appointment, we met Dr. Lorber, a fantastic doctor at the Cleveland Clinic who always treated us well and made us feel comforted and confident that our son was receiving the best care available. He diagnosed our son with Truncus Arteriosus (TA), a very rare, complex congenital heart defect (CHD). CHD's affect approximately 1% of babies, and of that 1%, only 1% have TA. Basically what it meant is that instead of having two separate arteries, the pulmonary artery and aorta, our son had one common artery out of his heart, as well as a large ventricular septal defect (a hole in his heart). A child cannot live with this condition, and we were told our son would need surgery in the first few weeks of his life in order to survive. Truncus Arteriosus is associated with a chromosomal disorder called DiGeorge Syndrome, so we also learned it was possible our child would have other health and development issues. We opted not to do any genetic testing prior to birth, however, because the slight risk of miscarriage was too much for us. We also knew we wouldn't terminate the pregnancy no matter what the tests told us. (We found out a week or so after Aidan passed away that he tested negative for all genetic abnormalities.) So, we continued to see Dr. Lorber every month and continued to be confident that our son would be just fine after his surgery. Specialized ultrasounds from other specialists found no other abnormalities, which was a good sign that our son didn't have any genetic problems. In February of 2009, both Dr. Lorber and Dr. Chapa, our high-risk OB that performed ultrasounds to check on our son's development other than his heart, told us that our son seemed healthy (despite his heart, of course) and that I wouldn't need to see either of them again. So all that was left to do was wait for our little boy! Finally after what seemed like an eternity, our son was born on March 11, 2009, at 5:03pm. He was perfect, a beautiful child, and he strongly resembled his big sister. He was 8 pounds, 5 ounces, and 20 inches long. I got to hold him after he was born, before he was taken up to the NICU. We knew he would not come home with us before surgery, and he would stay in the NICU of Fairview Hospital until being transferred to the Cleveland Clinic Main Campus for surgery. His cardiologist at Fairview, Dr. Mehta (another wonderful doctor and person) performed an echo on him shortly after his birth and told us his diagnosis was the same, and that he appeared to be doing very well. We named our son Aidan Michael. After another hour or so of testing, we went to the NICU to see him. He seemed huge compared to all of the premature babies in the incubators around him, and it was hard to believe he had such serious problems, because he looked to healthy and perfect. He was in all ways a normal newborn, except for the fact that he was very sleepy. Truncus babies are very tired and sleepy compared to an average newborn. We held him and talked to him, and even though the idea of that tiny boy going through open heart surgery was scary, I was relieved and anxious to get it all started, so that I could take him home with me. Family came to visit, and it was great to see our parents and for them to meet Aidan. Unfortunately, since it was flu season, our daughter Erin couldn't meet her brother, because she is only 3 years old and young children are not allowed in the NICU this time of year. We spent lots of time with Aidan, visiting him in the NICU and feeding him, and we also spent time in my recovery room resting. The next day, March 12, Aidan was doing well all day. We spent the day the same as the evening before, visiting him, taking pictures, and getting to know our little boy. That afternoon when we visited him at about 5pm, he had been giving a feeding tube in his nose because he was having a hard time with his bottle. Lots of babies with truncus have a hard time with feeding, it is just too much work for them. It worried me a bit, but I was assured it was normal and common for babies like Aidan. When we visited him that night at ten PM, he was very fussy and agitated. It was the first time since he was born that I heard him cry. I felt uneasy about it, I had a slight feeling in the back of my mind that something was wrong. However the nurses assured me it was nothing serious, just typical baby stuff. I went back to my room and fell asleep. The next morning I was awakened when one of the NICU doctors came in my room and told me Aidan had gotten very sick early that morning. I literally felt like my heart stopped. He told me that he was having problems with his heart, some of his arteries were narrowed so much that his heart was not pumping effectively. He told me they were giving him medications and expected him to be doing better in a few hours. I started crying, and asked if we could come see him, but he told me to wait a while, because there was "a lot going on". I don't know what came over me, but somehow, at that moment, I knew. I knew I was going to lose my son. I can't explain it, but I knew. I started crying, and waited anxiously until I could go see him. Finally a nurse came into my room and told us that the NICU wanted us to come down. I didn't even wait for a wheelchair, I walked the entire way. When we got there I saw a ton of doctors surrounding Aidan's incubator, and then I saw inside. My beautiful little boy was hooked up to what seemed like a thousand IV's and monitors, and a ventilator was in his little mouth and nose. It broke my heart to see him like that. The social worker at the hospital arranged for a priest to come and baptize our son, and I held his tiny hand through the incubator as the priest performed the ceremony. It was a blessing, and I am thankful for the thoughtfulness of the social worker who arranged it and the priest who came from home to do it for us. I am so glad our son was able to be baptized, and we were there to witness it. While the doctors worked on Aidan and tried to stabilize him, Jason & I held his tiny hands and talked to him. Despite what I felt in my heart was going to happen, I prayed to God to save my son. I told Aidan all about his big sister who wanted to meet him. The doctors told us they were trying to stabilize Aidan to transfer him to the Main Campus, but his tests results and numbers were not good enough to make a transfer safe. We went back upstairs and packed our stuff, signed my discharge papers and waited and prayed. Finally the doctors told us they were going to try and transfer him. The transport team was wonderful, they took great care of Aidan. The doctor in charge was very honest with us and told us there was a very good chance Aidan would not survive the transfer, that in fact there had been moments there in the NICU that they had thought they'd lost him. They told us whether he stayed or went, the risk was the same, so we may as well try and transfer him and see if they could do more for him downtown. They got him ready to go, and we told him goodbye, and that we hoped we'd see him downtown. The drive to the clinic was the longest drive of my life. I prayed that I'd see my son again, but I also prayed that if it was in His plan to take Aidan, please do it soon, because I didn't know how much more I could take. We made it downtown and I almost fainted walking into the hospital. I cannot describe the feeling of waiting for the elevator doors to open, and waiting to find out if my baby was still alive. We finally spoke to the doctors, and were told Aidan had made it to the hospital. It was a happy moment for a second, until the doctors continued with the news. Aidan's vital organs, including his brain, had been deprived of oxygen for a very long time. He almost certainly had very severe brain damage, among other possible problems with his kidneys, liver, etc. He was on huge dosages of five different medications trying to get his heart to pump, and none were working. And despite all of that, he still had a major heart surgery he would have to make it through in order to live. We knew even if (and it was a huge if) Aidan's heart suddenly started working, and he made it through surgery, there was a good chance he'd be in a bed for the rest of his life. It was then that it was confirmed what I had known that morning - my little boy's time on this Earth was coming to and end. I didn't want to keep doing things to him just because they were medically available - they were not helping. His little body endured so much on that last day, we didn't want him to have to do it any longer. We decided to stop increasing his medications, and we decided that after our families got to come and meet him, we would take him off life support. It was the most horrible thing to be faced with, and I pray that no other parents ever have to deal with it. All I wanted at that point was to see my little boy. We went to his room in the PICU, and it was heartbreaking. He was on no medications to sedate him, yet he was lying there perfectly still, a machine breathing for him. His eyes would flutter open occasionally, but that was it. I knew that he was almost ready. Our families came, and Aidan's grandparents, great grandparents, aunts, and other extended family got to hold him and meet him. As the evening passed his numbers started to look worse, and his heart rate started to slow. In a very beautiful moment, his heart rate, which had been in the 40s, jumped back up to 120 when the doctor put him in my arms. It stayed there for a moment, and then went back down. I really, truly believe that it was God allowing my son to let me know he knew me and loved me, and that he would be okay. Jason & I took a few moments alone to say goodbye, and then we had our families come back in as the doctor took him off of the machines. His heart was barely beating anymore, and he passed away quickly and peacefully, at 8:45pm, only slightly more than 2 days after he had come into the world. Losing my son has been the most painful, difficult experience of my life, but the joy and happiness I feel from having had him for those few days somehow eclipses the pain. I will miss Aidan every moment, forever, with every cell in my body, but I would never trade having known him for anything. He was the most perfect little boy, and I believe that he is in Heaven, where his heart is perfect now, just like the rest of him. I love my son with all of my heart and soul, and I am eternally grateful to him for the profound love I feel for him. He taught me so much in such a short time. I love you, Aidan Michael, and you are my angel!