In Memoriam - Aiden

We found out about Aiden’s condition during our routine 20-week ultrasound. The first 20 weeks were uneventful, so we had no reason to believe this appointment would be anything but a standard ultrasound and that our biggest decision would be whether we wanted to know if the baby was a boy or girl.

At first the appointment was fine, but after a couple of minutes, the ultrasound technician got really quiet and seemed to be spending a lot of time looking. She looked right at us and said, ”Something does not look right with the heart.” She decided to show some images to the obstetrician and brought us to one of the exam rooms. I remember a kind of denial setting in. I refused to believe that there could be anything seriously wrong. After a few minutes the doctor came in and said, “I believe your baby has a heart condition called Hypoplastic Left Heart Syndrome.” She recommended that we have a level two ultrasound to gather further information. That night I looked up HLHS on the Internet and was devastated to read the information that was available. I remember crying all night, hoping that somehow they were wrong. That same week, we had our level 2 ultrasound and were then referred on to a pediatric cardiologist for further images. Both confirmed the original opinion that our baby was going to be born with half a heart.

The pediatric cardiologist that we had seen was familiar with a study being done in Boston, where they attempt a fetal intervention to dilate the aortic valve to try to return blood flow to the left side of the heart. After reviewing my file, they determined that the baby was a good candidate and asked us to come to Boston to try the procedure. It is a fairly new procedure with little research data available, but knowing what we were up against after birth, we decided to do everything we could possibly do to try and save our baby. So on February 11, 2007, we got on a plane and flew to Boston for a day of meetings with doctors with the procedure being done the following day. Unfortunately for us, the procedure was not successful in dilating the valve, so we were back to determining the plan for our baby. We did find out during these appointments that we were having a little boy.

After the trip to Boston, we decided to move our care to the University of Michigan. For the remainder of the pregnancy, we had regular appointments and were given 3 options for his care. The first was comfort care, secondly was the 3 stage surgery to try and save his life and the third was that he could potentially be a candidate for a heart transplant. None of the 3 options was ideal, but in the end, we chose the 3 stage surgery for Aiden. From all of the tests, he was a good candidate. So on June 12, 2007 Aiden made his way into the world. Weighing 7 pounds and 9 ounces, he looked so big and healthy, it was so hard to believe that there could be something so very wrong.

He spent his first week of life in the NICU, with a few small complications. After about 4 days, he had to be intubated because his breathing was too rapid. On June 19th, Aiden had his Norwood procedure and did extremely well. He spent the next week in the ICU with very few complications. Slowly, tubes and lines began coming out and finally he was moved to moderate care and then the floor. His whole hospital stay was very uneventful and he recovered extremely well. On July 6th, Aiden was released from the hospital. We came home with all of his medications and spent the next several days enjoying him completely.

On July 10th, I was home with Aiden all day. He was doing really well and had been to the pediatrician the day before. Everything looked really good. The visiting nurse had been to visit the night before as well. Aiden had been waking up to eat every 2 hours and had been finishing full bottles, so we did not have to use the NG tube. At one point after eating he seemed to have a little bellyache, which was a side effect of a heavy antibiotic he was on. Other than that, he was content all day and was sleeping really well. At about 7pm, I was giving my daughter Kaitlyn a bath and Andy was feeding Aiden. He again ate a full bottle and I decided to give him a bath. He seemed cranky at the end of his bath and like his belly was hurting, so I dressed him and called the cardiologist. Aiden settled off to sleep in my arms and I was waiting for a return phone call. Suddenly, Aiden gave a little whimper and as I looked down, he took 3 long dragging breaths and just stopped breathing. Andy grabbed him and started CPR while I called 911. The EMS arrived and brought him to the hospital, but Aiden never responded to any of the efforts. I knew even before we got the hospital that he was gone. I just felt it.

We declined an autopsy because we were told that they cannot often find any real reason and we thought his little body had been through so much already. The doctors do not know why, but sometimes the post-Norwood babies have sudden death episodes. They happen without warning and are very sudden. Even as sick as he was, it was such a shock because he had done so well with the surgery and recovery. It is just another thing to add to the list of this unfair disease.

We miss Aiden everyday, but are comforted by the knowledge that we did everything that we could do for him. We would not have changed any of the decisions that we made regarding Aiden’s care. Even though his life was a short 28 days, there is no denying that he was very much loved and was very much alive. We love you and miss you Aiden!