We cancelled plans for the holiday weekend and took the time to look deep within ourselves to make a decision about whether or not to continue the pregnancy. We were thankful in the midst of our heartache to keep our two boys (Justin-5 and Evan-2) close to us...treasuring every bit of their laughter as it brought joy to our souls during the darkest hours of my life.
After the weekend, it was still difficult to articulate myself verbally and so I wrote. Below is the letter we sent to our closest family to give them more information about our baby's diagnosis and to explain our decision:
Dearest Loved Ones,
We are deeply sorrowful about our baby's diagnosis of anencephaly. And, while I am not yet capable of finding the words to explain our thoughts and feelings clearly while fighting back tears, it turns out that writing comes more naturally and my words seem to flow endlessly.
The road ahead seems long and dark. But, I realize I am not alone in this and I know you will all be grieving and looking for understanding as well. So, I thought I would share my thoughts, my findings, and our decisions with you in this manner.
First, what is Anencephaly? It means that part of our baby's skull and brain are not developing or are non-existent. It is a neural tube defect that is always 100% fatal. Our baby will either die in utero from an infection, during the stress of delivery, or more likely, within mins to days thereafter. It is a defect that occurs on the 28th/29th day of pregnancy....before we would have even known we were pregnant. Our baby will never see, hear, or ever be conscious, but his/her heart may beat for a short while and he/she may have some muscle reflexes (like wrapping a hand around a finger). We are most thankful that he/she should never feel pain.
But, we struggle with the medical care options available to us and the baby. Sadly, we have been praying that God would take this baby now, at His own will. Terminating this pregnancy seems like the easiest way out...in the short term. However, I believe I would never have peace in that decision and would second-guess it for the rest of my life. While I could never judge someone for choosing a different path in this situation, I cannot be the one to choose to stop our baby's heart from beating. His/her death cannot be on my hands. Instead, we will choose to carry this child as long as God intends and hope that at the end of the difficult journey, at least we will be able to say we did everything we could and have a sense of peace with the decision we made.
Believe me, I fully understand the horridness of what this means and have read many personal stories of women who have taken this journey. I know it will be the deepest sorrow I have ever felt...it already is. The heartache of carrying this child to term and even having to make decisions about delivery timing, vbac vs. c-section, medical intervention for the baby should he/she live several hours (like feeding tubes, oxygen, etc.) and funeral arrangements...it seems too much to bear.
When you have a moment, read this story of a woman who found about her son's anencephalic condition at the 20 week ultrasound and was encouraged to induce labor then, but didn't. There is also a link for a lovely video about her son, Austin John that is worth looking at as well--it has a great song that I have been listening to each day. The stories are tear-jerking, yet encouraging and insightful.
This is the full story of this woman's journey with anencephaly:
This is her son, Austin John's lovely video:
Anyway, before following the suggestions of her doctor, this woman first decided to seek the counsel of her priest. She pleaded with him to give her permission to induce delivery at 20 weeks, stating her case that she would merely be life-support for this child. What she writes brings me comfort:
"He listened intently to my sorrow and calmly explained that the church, in this circumstance, feels that at 33 weeks would be a proper benchmark to induce and delivery. The reason for this is that any healthy baby will survive a delivery at 33 weeks, anything prior is not likely and very risky for death. The church feels that this baby is meant to die from Anencephaly. Anything prior to 33 weeks would be a different cause of death. At 33 weeks, the risk of carrying this baby increases for me, which is also another reason for that benchmark.
My arguing with him did not change the churches standpiont. I told him how I felt and that I was praying for God to take this baby to heaven now, at his will. He shared that even Jesus pleaded with God for a different way before he died and Jesus had the free will to walk away, but he chose not to. He felt that we were chosen by God to bear this cross and in God's eyes, this baby is nothing less than perfect. He disagreed with the Dr. we saw and said that right now, this baby is viable. It is completely alive and with a soul but just imperfect from a medical science standpoint."
Our Pastor came over within 10 mins of Craig sharing our news. He reminded us that God's grace is sufficient for today; meaning that we need to focus on each day and try not to spend too much time fearing thoughts of the future...that God will meet us in our current situation, and lift us when we feel weak.
He asked us to remember what it felt like when we found out we were expecting. I remember feeling so much excitement....the first thing I did was say, "God, you are amazing! This wasn't in our plan and I don't even see how it is possible, so I know you're hands are all over this and you are in control of so much more than we could ever understand".
He helped with phrasing to explain the situation to Justin. He said Justin may pray for the baby to get better and to let him. He said Justin may ask, "Can't God help"? And, the answer is, "Of course He can, but His plan may be a different one than ours". So far, Justin is doing great. He is excited about the baby growing in my belly and touches/hugs it often. Despite his new understanding that his baby "sister" (we'll see about his predictions at the 20 wk ultrasound) will go to live in heaven instead of with us, he still tells me how much he is going to love this baby.
Here are some other thoughts our pastor shared:
Jeremiah 1:5 "Before I formed you in the womb I knew you"
So, that talks to the fact that this baby does have a soul even though we may question if I am just providing life-support to a body that doesn't have the part of the brain that would even allow it to think and reason.
Psalm 139: 13-16 "I praise you because I am fearfully and wonderfully made; I know that full well. My frame was not hidden from you when I was made in the secret place...Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
Our pastor's wife wrote to us and said, "...though it is extremely painful, we know without a doubt God never makes mistakes. This precious life is not a mistake, but is in God's plan. A gift and a blessing to accomplish His special purpose in your lives and those of us around you. God wants to bring glory to himself through this special child."
And, so we will wait for God's timing and pray for His grace to get us through each day over the next 5-6 months. I know it won't be easy and it will be trying on all of our hearts. Psalm 27:14 says, "Wait on the Lord, be of good courage and He shall strengthen thine heart. Wait I say, on the Lord".
With much love, but great sadness,
Jessica & Craig