Friday, May 6, 2011

Michaela Mae's Story

Michaela Mae was born December 18th, 2010. She was seemingly perfect. Michaela was an extremely happy baby, thriving, and her weight gain was in the 75th percentile. Although from the first day in the hospital I noticed she was panting, but the doctors assured me that it was normal.
In spite of her gaining weight well and being a perfectly happy baby I wasn't content with the thought her breathing was normal. So within a week of having her home I took her back to the doctors. They listened to her heart and lungs and told me she sounded great. They said she had a strong heart and that she was perfect, but she had a little congestion. That was the first trip of what would be many to the doctors. I took Michaela time and time again, and as time progressed she had more and more symptoms. Michaela began comfort nursing constantly as her way of feeding, and she forced air out through grunting. She also began vomiting, and making a pain scream to the point she would lose her breath. I was told she was congested, she had reflux, and then she had the common cold. The week after being told she had the common cold she began wheezing and having the worst labored breathing I had seen yet. So March 16th we were back at the doctor's again. I was tired of being told she just needed a humidifier. I had been hearing that for 3 months by this point, and I wanted to hear something different. Michaela tested positive for RSV that day, and received two breathing treatments there. They sent me home with inhalers and told me to come back the next day, but we didn't even make it through to the night before I took her to the Emergency Room.
At the ER Michaela was wheezing so bad they quickly decided to admit her. They did an x-ray, drew blood, and administered breathing treatments every two hours. On the x-ray the doctors saw Michaela's heart was enlarged, but they weren't sure what was going on and told me not to worry yet. They ordered an ultrasound of her heart and sent the results to Chapel Hill. At this point I knew something was very wrong, because Chapel Hill was a serious deal. We were moved from the general pediatric ward to the Intensive care, where we later were told that Michaela would be airlifted to Chapel Hill and would need extensive medicinal care, heart surgery or a heart transplant. I looked at my daughter who had been so close to perfect, and it was like she was another baby. She was on oxygen, she was screaming, her heart rate 200 to 210, gray colored, and had something so very wrong with her heart. I held my baby for what would be the last time for 17 days. They cleared a bed at Chapel hill and shortly later she was airlifted.
My husband and I followed suite. The three hour drive was torture. It was the longest I had ever been without my sweet baby, and looking back in her empty car seat seemed to make time stand still. On our way there we received a call that she had made it there and was in stable condition. We arrived shortly after that call with higher hopes that this would be an easier fix than surgery. We were greeted by a pediatric cardiologist who took us into the family room and told us that our precious daughter was critically ill, and was barely hanging on. The doctor again told us she would need possible surgery or a transplant, and he didn't know if she would make it, but that a heart defect called ALCAPA would be our best hope.
We went in the back to see Michaela, dressed in our yellow gowns, mask, and gloves. She had IV's everywhere, a breathing tube down her throat, and was heavily sedated. After only a couple of minutes of being in her room she started to crash right before our eyes. My husband and I ran out of the room and begged God to save our daughter. After what seemed like hours, but was maybe minutes, the doctors came out and told us they had stabilized her. They told us they had to paralyze and completely sedate her through the night in hopes of her successfully making it through a hearth catheterization, and possible surgery the next day.
Our family's came up to support us that night, and the next day Michaela had her heart catheterization. It was confirmed she had ALCAPA (anomalous left coronary from the pulmonary artery). She went straight from the heart cath to the operating room. They allowed us to see her in the OR before surgery, she was strapped to a table, with her arms stretched out and completely sedated. We filled the room with love and prayers and headed back to the waiting room. After over 6 grueling hours a nurse came out and said “Are you Michaela's mother?”. I replied “yes”, and she told me she didn't know details, but Michaela was alive. The doctors came out a little later and told us she was a fighter. Michaela had struggled through the surgery to stay alive because of how sick her heart was. The surgery was a success though, and that was what mattered. Her heart beat on its own after being stopped for the surgery, and blood was flowing through her re implanted coronary.
Michaela spent the next 31 days in the PICU (pediatric intensive care unit), and 7 days in the Cardiac Care Unit. I spent everyone of the 38 days and nights with her, and watched her struggles and triumphs. I had the joy of holding my baby after 17 days. There was good days and bad. Her left lung kept collapsing, she threw up her breathing tube, and had a hard time coming off of the drugs.
In the PICU I learned that when Michaela came in her heart was so swollen it was touching both sides of her chest wall. ALCAPA is a congenital heart defect where the left coronary originates from the pulmonary artery, instead of the aorta. Your aorta gives you blood to the left side of the heart that has been oxygenated by your lungs, but she was getting blood from her pulmonary artery which is low in oxygen. The left side of your heart gives blood to the body, which explained the weariness during feedings or activity. Her heart from the time of birth had been deprived of the oxygen she needed, and so the left side of her heart began to die. She has Mitral Valve insufficiency and because of the heart wall death her heart does not pump well. The doctors say it will take years for her to have a close to normal heart. As she grows her heart will get larger, and the dead wall of her heart will become smaller, hopefully to where she can lead a normal life.
Michaela is at home recovering now, doing what she does so well, and that is pretending like she's in perfect health. You can't tell her she's sick! Michaela's condition is 1 in 300,00, and she is beating the odds of a 90 percent mortality rate. She is literally 1 in millions. Michaela's scars are her only outward story of her sickness, because she would have you believing she was the healthiest thing alive. Her pictures before and after surgery tell stories of the fighter that she is. Her heart was and is still very sick, and yet she still smiles more than any human I know. Anyone who comes into contact with her knows she is a blessed baby who is destined for greatness.
Congenital defects are the number one killer of infants under the age of 1. 1 in 100 may seem like a small number, and to many people it is until it is their child.


  1. Hello Ashley - just wanted to say hi and introduce you to my daugher Emily.

    Emily has ALCAPA and if you read her story you'll be amazed how similar our daughters are.

    Emily will be 18 this year and is doing just great. Hope her story makes you smile :-)

    Best wishes
    Jackie x

  2. Yes, While I was in the hospital I was searching online and your story was one of the first ones I came across! It gave me such hope in a time I really needed it. Thank you for your story, you helped us out more than you know!!!


  3. I'm so glad it helped Ashley. It was one of the reasons I published my diary to the blog - ALCAPA is such a rare defect and at that time, the internet wasn't widely used. I didn't find anyone with the same defect until Emily was 7.

    Hope Michaela continues to do well.

    Jackie x