We survived the holidays. You were so missed, every second of every day. We felt your presence but that didn't stop us from wanting you physically here. I was so sad to see 2012 come to a close because it was YOUR YEAR. The only year you were here living with us, outside my womb. Though, it was also the WORST YEAR OF MY LIFE. I can honestly say this 35th year of my life has been the worst. 2012 started out with such joy, a complete family of 3 healthy, happy boys. 2012 ended with sadness in our hearts and an actual part of me dead. You are dead but I can really say that a part of me died when you died. I honestly don't feel whole and don't think I ever will.
Though we wanted an answer in 2012, it never came. It arrived last night. We finally have it. The results of your autopsy. The reason, or so some medical examiner, pediatric pathologist and a few others think, why God took you from us too soon. As opposed as we were of a doctor examining you, it was required in the state of NJ with an unexplained death of a healthy child and we were hoping it may bring answers. After they initially told us the day after you passed that it looked to be a classic case of SIDS meaning there was no explanation for your death, a diagnosis of exclusion, they have come back and told us differently. Last night was extremely difficult to say the least.
Last night we were told that your cause of death was aortic coarctation, the narrowing of the aorta, the large blood vessel that branches off your heart and delivers oxygen-rich blood to your body. When this occurs, the heart must pump harder to force blood through the narrow part of your aorta. They said as a result of this condition, your left ventricle was enlarged. So great, this all makes sense but what doesn't make sense is they say it's a birth defect and death doesn't occur unless there are symptoms. What also doesn't make sense is you were FULLY SCREENED BY A PEDIATRIC CARDIOLOGIST at 2 months of age! Your pediatrician heard a murmur at your 1 month check up and recommended we take you to a pediatric cardiologist to see if it was an innocent murmur or not. So we did it. Remember, we took you to the same cardiologist Liam sees every 3 months for his heart condition. They ran an EKG and an echo cardiogram and they said it was innocent. They said you were PERFECT and not to worry about your innocent murmur. If it really is true, you had aortic coarctation, they should have caught it during the echo and it's a very treatable condition when discovered.
So what doesn't make sense is at roughly 2 months of age you could be perfect and then 3 months later your heart could just STOP with NO symptoms. A major symptom of aortic coarctation is lack of weight gain, but you were HUGE! You were over 20 lbs at 5 months of age. Another symptom is shortness of breath, you NEVER had that. I could go on with the symptoms and you had NONE of them. We are also so confused as to how a birth defect like this could be missed.
Needless to say we have a lot to learn, a lot of second opinions to get and a lot of questions to be answered. I wish all this research could bring you back but we know it won't. What it can do is prevent anything from happening to your siblings or any other children in the future. One of the doctors is wrong and we have to figure out which one. Everyone involved is confused and something went wrong. We just have to figure out where and when the medical system failed us. Failed you, our sweet sweet angel.
Our hearts are broken, just like yours. This is only step one, we want answers. When they tell you that everyone involved in your case is confused because this is so abnormal, it doesn't settle our fears and thoughts.
Just know sweet Owen, we LOVE YOU. We think about you all the time and we miss you more than words could ever say. I am sad that it is now January, one month from your one year birthday. We are starting to plan our the celebration for your birthday and it makes me cry every time.
I love you so much. Your smile, your chubby legs, your spirit. Good thing I know your spirit is still here and I still have so many pictures to see your sunshine of a smile.
Your one and only Mom