February isn’t just for Valentine’s Day. In this house we celebrate heart month! Before Otto hearts were just a design and a symbol but now it all has such a deeper meaning to us. I’ve learned more about heart health than I ever thought possible and I learn new things every day. Heart disease is the number one killer of woman and congenital heart defects are the most common birth defect and affect every 1 in 100 babies. February 7 – 14 is congenital heart defect awareness week. In honor of this week here are some things about our personal journey with CHD.
- CHD means congenital heart defect. Some times it is referred to as congenital heart disease but defect is a better term because it develops during growth in the womb.
- The cause of a CHD is relatively unknown. There has been some research linking to a genetic disorder and if CHD runs in your family. For us? We have no history of CHD. We had a 1-2% chance (like anyone else) of having a child born with CHD. We were told that if we were to have another child that risk is estimated around 3-5%. There is a lot of conflicting statistics out there but this is what we were told early on.
- We found out about Otto’s condition at our 20 week ultrasound. It started by not being able to view the four chambers of the heart and was thought to maybe be an ultrasound error. After that was ruled out we were referred to a Maternal Fetal Medical center where Otto’s condition was confirmed.
- Otto has a corrected AVSD but still has a moderate to severe mitral valve regurgitation and a coarctation of the aorta arch . The mitral valve is what we are constantly monitoring as it will probably need surgical intervention in the future. The coarctation is mild and doctors are optimistic it will be fine and will not need surgical intervention.
- There are so many different forms of CHD and no case is the same. If you are the parent of a child diagnosed with CHD know that each journey is different.
- The journey of CHD is scary but these children are absolutely the strongest kids I have ever met. I cannot imagine life without Otto. He is so strong and has taught me so much in his two years of life. If you are facing a CHD in your family know that you CAN do this.
If you are considering donating to a worthy cause please consider the Helen DeVos Children’s Hospital Foundation. They have been absolute angels to our family. The three of us would not be here without their expertise, care and quick thinking.