Back in 2010 I was happily pregnant and full of excitement. Expecting another regular appointment I went to my 3rd trimester ultrasound. It was then that my entire world turned upside down, shaking me into an entirely new perspective on life... what matters and what does not. In its ugliness, I guess, that is the beauty in Heterotaxy, the way it humbles us and opens our eyes, minds and hearts.
My first reaction was fear, fear of the unknown. I had never heard the term heterotaxy in my 24 years of living on this planet and I didn’t know what to expect immediately following the diagnosis. Going to doctor appointments always brought me to tears. Luckily, I ended up with a caring cardiologist who trusted me with his personal cell phone number to call whenever any questions or concerns were eating at my brain.
On August 5th, 2010, my heterotaxy warrior made her big entrance into the world. Although she was required to stay in the NICU for 3 weeks, she did not need surgery at birth. She did, though, go home with a NG feeding tube. It was so overwhelming and scary having her home. I was afraid of not doing things right or missing something. I was afraid of heterotaxy. The first couple of months we were so cautious with her. We didn’t go to public places, we kept her pulse ox on the majority of the time, and we over thought everything.
It came time to take a trip out of state when she was a few months old. We almost didn’t go due to fear of being away from home if anything happened. Right before the time came to go on the trip she had a cardiology appointment at which we voiced our fears and concerns. It was that appointment that shaped the rest of our heterotaxy journey. The cardiologist sat down with us and told us not to worry so much. He told us to live life as normal as can be, as if there was no heterotaxy. To give our daughter a normal life and not keep her in a bubble. To keep an eye out for signs of complications, which we had been told about on many occasions by different medical professionals. He told us that even in the event of complications arising, not to think that she would die on the spot so long as we followed the instructions we had been given. His words gave me such reassurance. I called him on his cell phone right before leaving for our trip to double confirm what he had told us in his office. He again told me not to worry and said, “Go on your trip and have a great time!” and that is exactly what we did.
Since then we have traveled out of state and even out of the country on several occasions. My warrior is now 5 years old and has graduated kindergarten at a public school with minimal sick days. In her 5 years, she has been to many birthday parties, pool parties, school activities, the river, the lake, the beach, and much more. She has been through two open heart surgeries and an abdominal surgery, all which have been with minimal or no complications. To us, quality means more than quantity and for that reason we have chosen to let our special child live her life to the fullest for as long as she has the ability to. I will not deny that I still feel fear. I fear that we are being too risky when we allow her to do all the normal things a healthy kid would do. But, the advice her first cardiologist gave us stuck to us like glue. In our case, I believe that our warrior has done so well thanks to us following the advice of letting her live a normal life. Maybe her exposure has been her strength, I don’t know.
Heterotaxy presents itself so uniquely individually, and we all deal with it in our own ways. Ultimately, we all want the best for our kiddos and do what we think is best for them. My goal is not to brag about how well my daughter has done and is doing nor to say that my approach is the best. My goal is to give hope. To let it be known that sometimes it is possible to do normal things and live a normal life even when nothing about our lives are truly “normal”.
- Irene Belezair (Carlie’s mom)
