written by Niki, Michael’s mom

When you find out you are expecting you are instantly overcome with emotions. You’re happy, scared, excited, worried, anxious and sometimes all at once. I remember wondering about the gender right away and being worried about taking care of myself, so my baby could be as healthy as possible. I received excellent medical care from early on in my pregnancy at a great hospital, the Houston Medical Center, I followed all the doctors’ orders, and all prenatal tests always came back showing a healthy growing baby. All in all, we were blessed to have had a “normal pregnancy”. Once we found out we were having a boy we were excited to begin choosing a name, nursery colors etc. However, we never once planned for what was heading our way.  

           Since this was our second child, “I knew what to expect”. I packed ahead of time and had all arrangements taken care of in advance so we would have a smooth transition. The big day came when that unforgettable sharp pain of a contraction woke me at 7am. My water did not break, however; I knew it was not just a Braxton hick.  I remember opening my eyes slowly and excitedly thinking, “today could be the day!” My parents stayed with us more as the due date approached to help us with our daughter and myself. I told everyone it would soon be time and took a shower. Since I didn’t have any other contractions and I remembered how long (two days from when my water broke and 20 hours of actual labor) I went through with our first child, I said “we might as well get a bite to eat before going”. We went and let’s just say things sped up real fast! I had to wait between contractions to make it from the table to the car. I couldn’t believe how different the experience was already. We arrived and sure enough they said, “he was definitely on his way”.  After 18 hours of labor my health began to diminish as did his. As my levels went up, his went down and I was rushed into surgery for an emergency c-section.  I could feel things were off and even had my first anxiety attack as they rushed me to surgery. I was given so much medicine very quickly in order to prep for me surgery, but no amount of medicine could ever make me forget that feeling I had when he was born. They showed him to me and after I gave him a kiss I asked, “What’s wrong with him?” I was assured he was ok and quickly fell asleep from all the meds I was given. When I awoke some hours later, I immediately asked again “What’s wrong with him?” He was seen by everyone and everything checked out fine. We went home and every day I had the same feeling that something was wrong. Michael Aydan looked like a beautiful and healthy baby boy, but something wasn’t right. I remember someone telling me, “Everything is ok, he looks fine. All babies are different, and they all have different ways of being.” As the days went by, I noticed he began to sleep longer and go longer between feedings which was enough to convince me something was wrong. We made it to the two-week mark when I couldn’t take it any longer. Others even began to worry if I was suffering from postpartum or something because I was the only one so worried over something that even multiple doctors couldn’t see.  My mom was there, and I told her “I’m calling his pediatrician because somethings wrong”. His pediatrician said, “Without a fever or symptom to show distress the chances are greater of him catching something being so small and at the E.R. on a weekend. Give it an hour and if you feel the same even without symptoms take him in.” I was more anxious and held the baby out to my mom and friend and asked them “Don’t you all see something is wrong with him!?” As I had him held out, his body turned gray and went completely limp within seconds. We jumped in the car and took him to the nearest hospital but along the way he stopped breathing twice and I had to give him mouth to mouth resuscitation to help him breathe. Seconds mattered and we notified the E.R. that we are on our way which thankfully wasn’t far.

           After briefing them of the situation, they were ready to do a spinal tap to check for infection but because I told them that he stopped breathing, they took x-rays first to check his lungs when the real problem shadowed in the background. His heart was so overworked that it was “three to four sizes too large for his little body”. Words I’ll never forget. We were transported by the Kangaroo team, which is a special team that transports critically ill children. He was transferred from the Texas Children’s Hospital West Campus to the Main campus in the Medical Center.  He was instantly sent to the Neonatal Intensive Care Unit in critical condition which was a place that we never expected to be with our new baby boy. There were nurses, doctors, distraught parents and machines connected to critically ill babies everywhere. As we walked into that whirlwind, we still couldn’t imagine what was yet to come.

           Our baby had a team of over 20+ doctors and nurses working on him at once. They quickly intubated him and then the process began on figuring out what was wrong with him so they could try to save him. His diagnosis was a critically large Atrial Septal Defect (ASD) and a critically large Ventricular Septal Defect (VSD). Our newborn baby was born with huge holes in his heart! Due to his heart condition, his lungs were in distress, chain-linked other things and everything went wrong all at once.  Michael’s health was declining so quickly we had him baptized in the NICU at two weeks old, something we never “planned” for.

           We knew he needed an open-heart surgery (OHS) but he was too weak, and the outcome did not look good. It took two weeks before he was stable enough to go into to his first OHS.  They “patched” up the holes in his heart and he was connected to wires that would be connected to his heart temporarily following surgery just to ensure the correct rhythm was happening. When signing medical consent forms (which never gets any easier) there is always a minimal chance of something happening or not happening for this matter. There was a small (under five percent) chance that he would not regain a normal heart rhythm. Never did we think he’d fall in that small population. After realizing he did not have a normal rhythm, he went in for his second OHS and a dual chamber pacemaker was inserted into his tiny abdomen. It was a tiny machine with wires that connected to his heart and sent electrical signals to keep the rhythm beating normally. It seemed to do the trick and he was stable for the first time in his 3-month-old life.  

           We took him home when that unbearable feeling came back that something was wrong. This time I did not take no for an answer and we went to the hospital right away. We soon found out that his pacemaker wasn’t working properly thus leading to his third OHS. We signed more consent forms and as we dreaded seeing what the small chance of something happening was, we saw heart failure listed. By this point, we thought he has been through so much there’s no way. Our son managed to go into severe heart failure soon following his third OHS.

           After his options ran out, he was listed for a heart transplant where we waited most of the time in cardiovascular intensive care unit. After being listed for 29 days, his health was in serious jeopardy. They had given him all medicine available and maxed out on all the dosages. Our options were limited, and we were out of time. Michael was given a timeline of 48 hours where doctors had to see some improvement before other options needed to be explored. Extracorporeal Membrane Oxygenation (The ECMO is a temporary machine that acts as an artificial heart and lung.), complete life-support or hospice.  It was 10 pm, which was only 8 hours from completing the 48 hours and as I laid there not knowing what was going to happen, our nurse came in with a phone saying, “I had a call”. It wasn’t just a call, but “THE” call to let us know he had a match! I instantly felt for the other family because I knew our miracle came from their darkest hour.

           Michael’s dad and I lived in the hospital for the first six months of his life while he was on his heart journey. His dad would go to work in the day and come back at night while my parents stepped in and took care of our three-year-old daughter who had never been away from us before.  Our support system has helped us get through the darkest and most trying times. As I notified everyone, we prayed and waited together for Michael, his donor angel and the medical team. His time came minutes before the 48-hour mark, and he was taken off for his fourth OHS. Michael received his gift of life one day shy of being six months old. We were told there is a chance he will not smile, eat or even breathe on his own for months. There goes that small chance again.

           Our son is a true fighter and survivor! He has been blessed and highly favored because he woke up and wanted his bottle! He even sat up and smiled within days! Our family cannot express how grateful we are that he received his miracle and we continue to pray every day for his sweet donor angel and family.

           His journey has been on a rough journey but it’s not over! He has had countless hospital stays, hundreds of labs drawn and is currently taking 15 medicines per day. He will continue to need these medicines every day for the rest of his life. Michael is now a happy and overall healthy 4-year-old boy.  

          Our family has chosen to give back and participated in the Superhero Heart Run and for three years in a row had the largest team in Houston. By the 4th year we hosted an event benefiting heart warriors and families in Houston and are so grateful that Heart Hero’s became a sponsor in our effort to give back.

           You can only plan for so much before life happens and you find yourself in the most unimaginable positions.  A big part of being a parent means being your child’s advocate even if it is just means listening to your gut feeling in order to keep them safe. Michael is an extraordinary human being and has so much ahead of him. Heart Heroes is important to our family because they have created another support system with friends who become family. Having someone who understands what you’re going through is priceless. Michael often wears his Heart Hero Cape because he knows he is a true-life warrior! 

Our family welcomes you to follow his journey via Facebook. Prayers for Michael Aydans Miracle Heart