Denial - 12 More Days

denial 

noun

1. an assertion that something said, believed, alleged, etc., is false

2. refusal to believe a doctrine, theory, or the like.

3. disbelief in the existence or reality of a thing.

4. the refusal to satisfy a claim, request, desire, etc., or the refusal of a person making it.
 

Denial is exactly what it was when we first heard the news.  Even the days that followed, I didn't call the doctor's office to make the follow up appointments right away.  I thought that things would be fine and they would do the tests and find out that they were wrong.  I have two beautiful, healthy girls at home – they barely even catch colds.  There is no way that my son is going to have a major heart condition.

First Steps

Our first appointments were a cardiogram for him, a meeting with the cardiologist to explain the results, a meeting with the genetic counselor, and a possible amniocentesis.  The cardiogram took two hours – they looked at his heart, very artery, vein, blood flow, and everything they could.  At one point I was told that he wasn’t sitting in a good position so me and my husband went and ran stairs trying to get him to move. 

 

From there we went for a meeting with Dr. Cutler, our new cardiologist.  She was so reassuring, she explained what they saw and confirmed that our son did in fact have a heart condition.  Denial became even stronger for me, however the news hit my husband in a whole different way.  Thoughts raced through my head – what does this mean, how do we deal with this, are we looking at years of issues, how do I explain this to the girls?  As I sat there crying Dr. Cutler took her time and explained everything – the good, bad, and the ugly.  She said that it was too early to jump to say what exactly my son had, seeing he wasn’t sitting in a good position and we would need to come back to another cardiogram to get better pictures. 

 

Our third appointment was the genetic counselor.  Now let tell you at this point I hadn’t heard anything from my original blood work.  And my doctor had told me no news was good news when it came to the blood work for genetic anomalies.  Not only that but looking at our family history there is nothing.  Between my husband and I’s complete medical history we could not find one genetic anomaly so how could my son just have one?  Another question, it seemed to be all questions and no answers.  The counselor explained that children with this type of condition normally have one of two genetic concerns, one is Down Syndrome - however they were pretty certain that son didn't have this seeing my blood work previously told them that he had a 1 out of 40,000 chance to have Down Syndrome.  There was another concern a Q22 deficiency - with this the 22nd chromosome should have a tail to it but with this deficiency the tail is missing.  With that gone the child could have a range of problems from a clef lip to serious learning disabilities but no one could tell you what the child would have if they have a Q22 deficiency.  The counselor strongly suggested that I do the amniocentesis to rule it out completely.  When asked we were given a 2% chance of a miscarriage with the amnio.  I'll never forget looking at my husband and him looking at me and just knowing that the chance wasn't worth it.  At this point, whatever caused this issue didn't matter.  It wasn't worth my child, it wasn't worth the pain, it wasn't worth the risk.  If our baby had more than a heart condition we would face it.  Just like we were going to face the heart defect.  For some reason, at that moment in the all the confusion and heart break that I was going through I was oddly calm and collected.  It was the first time that in the ciaos that I saw a light of hope.   

Peace, Love, and Cupcakes,
Jillian Whalin