(I know this is straying from my typical blog post, but since this is an established forum for communication, I think it will be easiest to give occasional updates here.)
We were sad and scared to learn last week that our unborn daughter, Amelia, has a significant heart defect. She has a complete AV canal defect, which as we understand it, basically means she has two holes in her heart that will allow oxygenated and un-oxygenated blood to flow together and into her lungs. This creates a need for her to have open-heart surgery as soon after birth as possible, probably at 3 or 4 months old. Before the surgery, she is likely to experience difficulty breathing, eating, and gaining weight.
In addition to the complications caused by this defect, we were also told that we now have a 50% chance of Amelia being born with Down’s or another chromosomal disorder such as Trisome 13 or 18 (Down’s being the most likely). The doctor was going to perform an amniocentesis so that we could know for sure, but I declined, as I am aware of the risk of miscarriages related to this procedure. When I told the doctor we would not terminate the pregnancy, she said there was no point in doing an amniocentesis in our situation: it won’t change the pre or post natal care provided to Amelia. So now we will just wait until Amelia’s birth to find out if she has a chromosomal disorder. So far, she does not have any soft markers of Down’s (measurements or blood work), which is good, but the heart issue is a hard marker that keeps our percentage at 50%.
We would certainly appreciate your prayers!
- Please pray for our anxiety level to stay low. In my experience, the last 3 ½ months is a long time in any pregnancy, and it will feel especially long as we we will be waiting to find out what exact issues we’re dealing with until birth.
- The pediatric cardiologist saw promising “parachute strings” growing over one of the holes in Amelia’s heart. Please pray that they continue to grow, as this could reduce her diagnosis to a partial AV canal defect, which would postpone open heart surgery until Amelia is three, and eliminate her having symptoms at birth so that she would be able to progress as a typical newborn.
- Pray that there are no chromosomal defects.
- Pray that our marriage/family will be strong and that anxiety over this will not cause tension in our home.
- Pray that we will be godly and effective parents to all three of our children, regardless of what extra challenges they face in life.
Thank you for caring enough about us to read this! We appreciate all the support we’ve been offered by friends and family. Here’s an update on how we’re doing emotionally.