Wednesday, November 6, 2013
Blue - we found out our baby is a boy! but he also has a fatal diagnosis. My thoughts a few days later -
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
On Wednesday Jeremiah and I went to our 20 week ultrasound excited to find out – Blue or Pink?! We quickly (and quite clearly!) saw that it was a boy! Then our tech got quiet. Being our first pregnancy, I didn’t know if it was taking longer than normal or if it was normal for her to be so quiet as she kept looking and looking. She pressed harder and harder, tried different angles, tilted the exam table back, sent me to use the bathroom to come back and “try again”. I figured he was just a wiggly worm and kept moving too much for her to check on everything. She left and brought in our OB saying maybe she could see it. See what? What is going on? Why do I feel so uneasy?
Dr. K came in and I smiled and said hi. She quickly said hi but then looked at the screen and placed her hand on my leg. “We cannot see the back of your baby’s head and it might be that we can’t get a good angle but I want you to know the level of my concern. If the skull is not there… this is a baby that won’t survive.” She said it calmly and with kindness in her voice, but it was clear. Her words knocked me out of my own body. Tears welled up as she said they would call a specialist at Miami Valley to get us in for an ultrasound at their internationally known center where they might be able to see more clearly and tell us everything is fine… or not. I lost it when they left the room. Miah held me and said “I got you”. ‘We don’t know yet,’ I kept telling myself.
Fast forward to the exam room at Miami Valley hospital and it felt like déjà vu. The tech looked and looked, measuring this and that, confirming he’s a boy… I just wanted to see that beautiful profile shot of his head, but we never did. The Dr. came in, looked around a bit himself, whispering to the tech and another Dr. And then he spoke…
“Ok,” he said, “Unfortunately...” and then my tears started again. My eyes burned, my mind swirled. I took short shallow breaths as I tried to listen and not audibly sob. He explained something like this… Unfortunately we can confirm that the back of your baby boy’s skull is not there. It’s called Anencephaly. This is a rare diagnosis but the prognosis is very definite. He will not survive. Basically when the spinal cord forms it goes up and forms the skull. With this neural tube defect, it then stops at the neck. The brain forms but is exposed to the amniotic fluid and is dissolved. The child cannot survive. He has a brain stem which allows the organs to function and the baby to grow otherwise normally as he is on mom’s life support. In most cases the mother is able to carry the baby to term and deliver. He will only live a couple hours to a couple days.
Shock. Disbelief. Devastation. These words are not really accurate enough to describe what we felt and thought in those moments.
Now that I have described what happened and our diagnosis… perhaps in more detail than you cared to read… J I want to talk about “what now”.
We have decided to carry our baby boy to term as opposed to inducing now and thereby ending his life. We believe still that this is our miracle baby that God chose to give us. It’s just as if he would be born and live a normal life and our belief then would still be that his days would be determined by God and the time for him to go home, determined by God. We believe God doesn’t make mistakes and that He has His reasons and He is good. We may not understand it – maybe not even in our lifetime, but we see His promises to be true and trust His ways are higher than ours.
My amazing husband Jeremiah read to our church on Sunday from Psalm 139, “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.”
These were not my thoughts initially but I’m so thankful they are now. Though it comes and goes in waves and there are times when the tears just keep coming and others when I feel numb and dried up, my convictions and my hope in the Lord are only strengthened through the fire.
I don’t want to be sad as I feel him move inside me or as he grows and I along with him. I’m learning to see this as my blessing – my time with my baby boy. The rest of the world will get so little time but I get these next few months. I get to feel the flutters and kicks. I get to grow physically and experience the discomfort and perhaps pain knowing he is safe inside my belly, free from pain or worry. I get to tell strangers at the grocery store that it’s a boy and he’s due in February and he is our miracle! I get to go through labor and delivery… to get to hold him for however many minutes God gives us. I don’t want you all to feel uncomfortable around us. We need to talk about it. If we can’t in a particular moment we’ll say so. Otherwise, rejoice with us in this tiny precious life. Ask me how I’m feeling. Tell me my bump looks cute or you like my maternity outfit. Ask us if we’re sleeping. Remind us of our commitment to Christ and the decisions we have made.
I fully believe that God will grant us more children… whether from my womb or not. But for right now we want to love and acknowledge the life of this child. He still counts. He is still our first son whom we will name, mark birthdays, and remember for the rest of our lives.
Though I type this in tears I must reiterate again and again…. We love our Savior. God sent His son knowing He would die. He took our punishment on the cross so that we could live with Him forever in Heaven. We have this miraculous hope that this world is not our home. “If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved. For it is with your heart that you believe and are justified, and it is with your mouth that you profess your faith and are saved.” Romans 10:9-10
Our baby will never have the chance to choose or reject God and so we believe he gets to go straight back into God’s arms. We don’t have to live with the fear or worry that He might not accept Jesus as his Savior. Baby boy doesn’t have to experience pain and all the many hardships that life can bring. Perhaps my dear grandmothers will get to hold him in Heaven once we no longer can on earth. And one day, when the Lord calls us home, we will see him again.
Dear family and friends we can’t thank you enough for your love and prayers. We have felt so supported and never alone. That is yet another gift God gives. Thank you. With all that is within us – thank you. May we all look to the One, the author and perfecter of our faith. He who said, “I have written these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!” John 16:33
May the heart and faith of you who believe be strengthened, and may those who don’t… choose this day to ask for God’s forgiveness of sins and accept his free gift of salvation.
With love, Amy, Jeremiah, and baby boy Whitsel