Our daughter is sick. It’s hard to even write those words she looks so “normal” right? But internally her body is fighting a battle every day. Claire has cystic fibrosis a rare genetic disease that affects primarily the lungs and digestive tract. This is our journey from day one to now in four parts I feel ignorant for saying this but before my second pregnancy I had never heard of cystic fibrosis. I suffer from terrible health anxiety so when I was super anxious about my 20-week anatomy ultrasound. I thought nothing of my increased anxiety other than my normal health anxiety playing its part. I had felt like something was “off” early in my pregnancy, so the thought was looming over my head, but I thought my head was playing tricks on me It wasn’t. Twenty-four hours after my scan, we got the call that the ultrasound showed that our baby’s intestines had lit up bright and there was a separation in part of her brain. I immediately started freaking out, primarily about the brain issue. I was scheduled for a high risk perinatologist visit and ultrasound eight days later. The wait for that next appointment was excruciating. When the appointment finally came, we were elated to learn our baby’s intestines were no longer bright and the brain issue was likely an error or transient finding. I was so happy this nightmare was behind us. The perinatologist then told me that even though the bright intestines were gone we would need to be tested for some things that may be a concern because of the earlier ultrasound findings. I had to undergo testing for a variety of issues including trisomies such as Down Syndrome, infectious diseases and cystic fibrosis. I had six blood draws in ten days to test for everything The test results slowly started trickling in and a week later we found out I was a carrier for cystic fibrosis and my husband had to be tested. Both parents have to be carriers in order for a baby to inherit cystic fibrosis. A week later my husband came home early from work and I knew the second he walked in by the look on his face that he was about to tell me he had his test results and was a cystic fibrosis carrier. And he did. I knew in that moment our daughter had cystic fibrosis even though it wasn’t confirmed. She had it. My whole body felt it. The psychological weight of hearing your baby may be born with a terminal illness was too much to take.
Even though my mind was spinning the doctors informed us we had big decisions to make and fast. My husband and I had the awful experience of having various doctors talk to us about termination of the pregnancy and timelines. I don’t wish that feeling upon anyone, feeling your baby kick inside cheerfully as a doctor talks about terminating them. The alternative was an intense regiment of monitoring for a bowel blockage. This included weekly ultrasounds and twice a week non stress tests. Many babies with cystic fibrosis can’t pass that first black tar like poop and end up with a blockage that can require surgery upon birth. That was my biggest concern. I wanted to be ready if she had this and deliver at a hospital she could be treated at. We opted against the amnio we were keeping our baby no matter what. We just wanted to be ready if she did end up with a bowel blockage. I continued weekly ultrasound to monitor her intestines. Every ultrasound was great with no bright intestines. The doctors were reassured. I was not. I became agoraphobic only leaving my house for my three weekly doctor appointments which I hated going to. The happy pregnant women in the waiting room would try to make small talk and I was just terrified. I didn’t want to talk to anyone. I cried more than I thought was humanly possible, my eyes swollen to the point that I would have to ice them almost daily to keep them open. I had to force myself to eat many days, but the stress and anxiety was overwhelming. I had to still be a mom to my two-year-old son and a wife to my husband. It was truly one of the darkest periods of my life Little did I know that my horrible pregnancy would be the “easy” part and our journey with cystic fibrosis was just beginning...…..
Photos by Poppy Lea Photography
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