“In February of 2019, my husband and I found out I was pregnant! We were anxious at first since our daughter was 3 and our son was 11 months, but quickly we made room in our hearts and lives for a new little love. I had bloodwork done to confirm the pregnancy, but I had this nagging feeling that something was not right. I kept telling my husband how worried I was. I remember saying ‘my gut feelings usually are never wrong, especially about our children.’ At our 8-week ultrasound I was so nervous I covered my eyes during the test because I was certain there would be no heartbeat. To my surprise, there was a heartbeat and we were told everything looks great! For a second, I felt reassured. Not long after, that feeling returned and I could not shake the sense that there were complications with the baby.
On April 22, 2019, we went for our 12-week ultrasound. My husband and I went to the doctor’s appointment kid-less. We were excited to get a little time with each other. The ultrasound seemed routine and quick; then our doctor told us that she needed a different view of the baby. We quickly became suspicious that my motherly instinct was speaking the truth. We were sitting in the exam room of the office trying to reassure each other when our doctor came in and said, very matter of fact but incredibly compassionate, ‘I have made an appointment for you with a Maternal-Fetal doctor today. I believe there is something wrong with your baby’s head that is causing the facial features to be misshaped.’ At first, I sat there and stared at her. ‘What could that mean? Could it be fixed after birth? Will she be made fun of? Will she be delayed?’ I never once thought that I would be carrying a terminal pregnancy and our sweet girl would die.
At the maternal-fetal doctor, we received another ultrasound, in a dark room with a bright screen that displayed what the ultrasound tech could see. After a brief time, she was done and we waited for what felt like an eternity in those few minutes. I could not imagine what could be wrong with our baby. How could this happen to us? What did I do wrong? The specialist came in and said, ‘this fetus has what we call acrania and exencephaly/anencephaly. Two other doctors have looked at the scans and we all agree. This fetus is not compatible with life. We recommend termination of the pregnancy.’
In a blur of words, she explained the condition, she stated that our baby was missing the crown of her skull and her brain tissue was exposed and not forming properly. Helpless and sobbing, we were expected to make a decision I had never thought about. Carrying a baby that will die to term or terminate now. They mentioned how we had other kids to think about and my safety. They stated that they could start the paperwork to terminate that day. My husband and I requested a minute to ourselves. Sitting in the dark room, illuminated only by the ultrasound screen, we sobbed. How could this be our life? How could we possibly make this choice? What is the right choice? We requested more time to consider all of our options.
Leaving that office, I felt this desperate need to speak to my OB/GYN again. She is knowledgeable, compassionate, reasonable, loving, straight forward; I needed her voice of reason. Her medical assistant ushered us back to an open room and made time to speak with us, cry with us, and just loved on us in one of our hardest moments. My doctor also made the time for us. That is when she said the words, ‘You are in no more risk carrying this baby to term than you would be if your baby was healthy.’ Ten minutes prior it seemed as if carrying our baby, giving it a chance at life, was the selfish option ‘because you have other children to think about.’ My OB/GYN gave us a little glimmer of light in an impossibly dark situation.
For a week we discussed both options. One day we would be set on termination and the other we would agree to carry to term. Before we made our decision, we decided that we would be doing this as a team. We would be supporting, loving, and fight through this to make our marriage stronger. I started having nightmares about terminating our baby. I would wake up covered in sweat and crying.
I remember being at work and I looked up what exactly the procedure was for termination. I called my husband in tears, saying that we had to take termination off the table. We had to give this baby whatever life it was meant to have. We were going to be carrying this baby as long as we were given because we couldn’t make this choice. He agreed and was supportive. We did early genetic testing and were told it was a girl. Norah Lou.
During the next 6 months, we did our best to prepare ourselves for Norah’s departure. I lived the bitter-sweet life of a mom carrying a terminal baby headed for heaven. I flowed effortlessly in between just not wanting to have a terminal baby to wondering how I was going to do it. The darkest unknown looked us in the face every day. Explaining to our daughter that her sister will not be able to come home was gut-wrenching. But as kids always do, she taught us about unconditional love, optimism, and encouragement.
We learned how to show up for people when our forecast was cloudy. This whole journey stretched our hearts and grew our soul in ways we have never thought possible. Many times, during our ultrasounds we saw Norah do things healthy babies do. She moved so much, would swallow, play with her tongue and feet. It was amazing seeing her this way as we didn’t know if we would get to meet her alive. I felt a deep connection with her that I hadn’t felt in my other pregnancies.
I shared our journey on social media to bring awareness to so many topics. Kindness, unconditional love, grief, termination, anencephaly, perseverance, and the importance of time.
In the early hours of Oct 21, 2019, we checked into the hospital OB floor. It was induction day, to meet our angel. We were tired, we were nervous, we were surrounded by amazing family members and friends. There was a calm presence in the room during labor that day. The hospital staff and my doctors were amazing. Norah moved, turned, kicked and jabbed during the entire pregnancy and up until the very end. The labor took almost 10 hours and then it was time to push.
Our little fighter was breech (the position she favored during the pregnancy) and got stuck a few times. Most of it is a blur now, but I remember thinking that she had been stuck too long to survive. I wanted to quit, I thought that moment my heart would stop. I was shattered. My husband was gentle but stern and coached me away from fear and made me dig deep to finish what we started. Finally, after a traumatic/tragic delivery at 6:09 p.m. our 4-pound 13-ounce Norah Lou was born still. She was already in the arms of Jesus.
I pleaded with myself to memorize every inch of her. She was beautiful with the most precious plump lips and cheeks. She had a tiny button nose that resembled her brother and sister. Her hands and feet were perfect with the longest nails and toes. I will never forget the weight of her laying on my chest or the way her cool cheeks felt. During our time with her, we read her stories, left her cheeks wet from tears and prayed over her. We were surrounded by the most amazing people who poured so much love into us and Norah. Her sister and brother got to meet her and love her.
Our time with her will never feel like enough. That’s the funny thing about time; it doesn’t stop for anyone. I will always have a desperate ache to hold her again and the grief is heavy, but every ounce of pain is worth the love we feel.
Norah has transformed people we have never met. She is teaching us and people around us the importance of making time for people, kindness, priorities, love, and always taking too many pictures because when it’s all you have it will never feel like enough.
Norah Lou was love. She was growth. She was transformation. Our lives will never be the same…in the best ways.
Faith means trusting plans we don’t desire.”
This story was submitted to Love What Matters by Audra Porter of Anderson, Indiana. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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