I was almost 28 weeks pregnant, and our OB had referred us to PCMC for an echo cardiogram. I was diagnosed with Type II diabetes many years back, and though my BG levels had been relatively well controlled during the pregnancy, it is standard to check for heart defects in all diabetic moms. We had been up a few weeks before for the procedure, and they called us for a follow up.
We left early to head to the hospital, after not getting much sleep the night before, but we were optimistic. Todd was so reassuring and kept hold of my hand, every minute that he could. Before I was quite ready, they called us in and the tech began to check our baby's heart. She was quiet, though she had warned us she would be. We watched the morning news program on CBS, and I remember really liking the dress that Oprah's Gayle is wearing, but not catching much else.
The tech had the cardiologist join us, and I remember willing myself to believe that all of this was still normal, they were just being thorough. When they finished and asked us to meet in the office to review the results, I knew in my heart that this wasn't a good sign. We had had such a charmed pregnancy up to this point-depsite all the obstacles, we got pregnant fairly quick, I had had almost no sickness or other issues, and we couldn't believe we were getting so close to welcoming our little girl. I couldn't imagine that our good luck wouldn't continue, and yet somehow knew it was ending...
The cardiologist and nurse coordinator explained that they had found a defect in her heart. I have to rely on Todd's memory of this discussion, because I stopped processing everything for a bit. We learned that she had a defect called Truncus Arteriosus that meant that a single blood vessel comes out of the left and right ventricles instead of the normal two. The prognosis, while scary, was relatively positive. Truncus Arteriosus, when treated shortly after birth through open heart surgery, usually has good results. Breathe in and out, Jess. We can do this.
And then they started talking about DiGeorge Syndrome. This heart defect is often (25-40% of the time) associated with a chromosome abnormality where a chromosome does not develop properly. The result varies from 'just' a CHD (congenital heart defect) to severe developmental, psychological and physical concerns.
All things I was most afraid of, the things I never thought I would find the strength to handle, were suddenly presented to me as real possibilities. How would I find the courage to help her live a strong and happy life, where would we find the resources and the money to give her all the opportunities she deserved, how would we manage? It's hard to talk about the darkest places in our minds where we are scared and unworthy, but impossible to ignore them when presented with a challenge to the picture of what we thought our life would be. I felt guilty for every fear, and responsible for making a choice to have a baby after so many years, and believing for a minute that it was proof that I made a bad decision, once again.
We were told the baby would be tested for DiGeorge when she was born, or we could decide to do an amniocentesis before to find out. We would hear from a perinatologist and geneticist in the next few days to determine next steps.
After talking to the doctor and nurse for quite some time, we headed home and spent the day together. We talked and researched and cried and just held hands. We talked to family, and received a priesthood blessing from my dad and two of my brothers in law. We were referred to a Facebook forum of people involved in the world of CHDs-parents, children, nurses, etc. I took a few days off work to process the news and spend time with my sweet, optimistic husband. I'll never forget how he let me cry and cry and he never gave in to anger or despair, he always reminded me of how happy we were and how blessed to have this little one coming. Thus began our journey...
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