Congenital Heart Disease

One year ago, Tim was in Germany, Micah had just turned one (Ben, two and a half) and I confirmed that I was pregnant. I already knew because I was already feeling a little sick. So, I also already knew she was a girl. The thing I didn't know was that at that point her heart had, most likely, already formed incorrectly. The heart is the first organ that forms and starts to beat by 6 weeks. Around 4 weeks, when home pregnancy tests are used, the heart is already forming arteries and chambers.

Congenital Heart Disease (CHD) means heart defects that are formed in the womb. CHD affects 1 in 100,000 live births. Every woman has at least a 1% chance of having a baby with CHD. Those odds increase with a family history of CHD. However, CHD is not genetic. It does not have a greater prevalence among any ethic group. It has not been proven to have been caused by any environmental factors. There are greater odds of a child with a chromosomal defect to also have heart issues, however CHD can happen even without chromosomal defects, such as Maelyn's case. CHD diagnosis are usually complex with more than one issue. Single ventricle defects are most severe type of defect because there is no cure. They only account for about 3% of CHD diagnosis. There is no way for that 4th chamber to form after it doesn't form during those first couple weeks of pregnancy, which means a life time of palliative care, including the Fontan surgeries. The first surgery will direct the blood flowing from the top half of her body directly into her lungs (instead of her heart). The second surgery, which will happen when she is around 2 years, will then direct the blood flowing from the bottom half of her body directly to her lungs. 

The day after I found out I was pregnant, I took Micah to his one year well check (and Ben's 2.5 year well check) where we met our new pediatrician, who caught Micah's enlarged liver and sent us for further testing leading to his diagnosis. Once Micah was diagnosed with Glycogen Storage Diseases I didn't think we would get another rare diagnosis in our family, but CHD doesn't discriminate. Congenital Heart Disease affected my family one year ago, even though I didn't learn anything about it until a few months ago.

Thank you all for praying so much for us over the last year. I've wrestled with how God could knit my daughter together with a crooked, broken heart, but He has carried her and done so much in our lives through all of this. She has a long way to go, but I know that the prayers wont stop, and that God will continue to carry out His plans for us. On October 1 Maelyn will have her first open heart surgery. 

I say to myself, "The Lord is my portion, therefore I will wait for Him." (Lamentiations 3:24)
Before He former her in the womb, He knew her. Before she was born, He set her apart. He has appointed her. (Jeremiah 1:5)