In November of 2011 my husband Steve and I learned we would be welcoming a baby around late July or early August. After a miscarriage in 2010, our third pregnancy, I was hesitant to get excited. But the pregnancy nausea and fatigue hit pretty hard. While I was laying on the couch in misery I just reminded myself that all these symptoms meant a healthy pregnancy! I had very few symptoms with baby #3 so I tried to see the positive.
We already knew there was an increased risk of a genetic condition, already having been blessed with one child with a hereditary chromosomal abnormality. Our second daughter has partial trisomy 13, where part of her 13th chromosome is duplicated on to her 2nd chromosome. We were prepared to welcome with open arms any blessing God sent to us, regardless of medical conditions. But we still both decided to stay positive and think "healthy baby" until we had a reason not to. Unfortunately on February 8, 2012 we had a very serious reason to grieve. We learned that our precious baby wouldn't live outside the womb. He was diagnosed with acrania/anencephaly. He is missing a large portion of his skull, and as a result the brain tissue fails to develop properly. It's a neural tube defect and occurs in 1 in 1,000 pregnancies, but we also have reason a strong reason to believe it could be connected to his genetics. We learned that he is in fact affected by a genetic abnormality involving his 13th and 2nd chromosomes, and is the opposite of Natalie, missing some genetic material instead of having extra.
We've found comfort talking to parents who carried babies with with the same condition or carried pregnancies to term with other "not compatible with life" diagnoses. While I know some people question our decision, it was not a difficult decision to choose to carry our baby to term. I could no sooner end this pregnancy than I could take the life of Julie or Natalie. Few of these babies are allowed to be brought to term, but I am so glad that we made the decision that we did. In fact I'm hoping to have a long pregnancy filled with kicks and hiccups and elbows to the ribs. This baby is a blessing in our lives, and hopefully in the lives of all of you who will get to know him through my words and pictures. We are praying he is born alive, and will feel doubly blessed if he lives for hours or even days. Your prayers during this time of joy and grief are very appreciated.
If you'd like to learn more about this condition I suggest http://www.anencephalie-info.org/e/index.php