By: Robert and Kelly Henke
A couple weeks before our 20-week ultrasound, I had a gut instinct that something wasn’t quite right.
I couldn’t place it, but I knew something was wrong. My husband, Robert, and our 20-month-old daughter were both at the ultrasound. Never did I expect to hear the word “Anencephaly.” It was a term I was unfortunately familiar with, but never did I think I would hear it for one of my own children. Everything about our baby was perfect, heartbeat was strong, all the other organs were developing as they should, except for the most important one- the brain, which did not develop and in turn leads to a 100% fatality rate.
Instantly, tears began running down my face in disbelief. We were immediately told by our doctor that ending the pregnancy was an option and if we chose to continue, we would be treated like any other pregnancy with the same love and care, monthly checkups, and even the same awful glucose testing.
For a few seconds, ending the pregnancy ran across my mind. How in the world would I be able to continue a pregnancy for the next 5 months knowing how it is going to end? What about all the comments or questions I would receive from strangers? How could I emotionally function?
Within seconds, those questions and doubts of how could I continue this pregnancy were being pushed aside by the overwhelming feeling of this is my child, this baby is wanted and I want to meet him or her and give them the best life they’ll ever know for as long as I can.
Robert felt the same way and so it was decided, within seconds, that we were going to meet our baby and give them a chance.
We’re typically ones to leave gender as a surprise at birth, however, given the circumstance, we wanted our baby to have an identity for as long as possible. The gender was not recorded at our 20-week ultrasound, so we went in a few weeks later and found out we were having another girl! We decided to name her Annie, meaning grace. We weren’t quite sure what grace was going to come of losing our daughter, but in due time it would all unfold.
Choosing to carry a child you know you are going to lose is a most selfless act but so painful at the same time. Although the decision to carry Annie came easy for us both, the time between the diagnosis and her birth was anything but.
As we learned more about anencephaly, our fear increased daily about how she would be born, if we would make it to 40 weeks, or if she would be born alive. Seeing other pregnant moms was very difficult. Planning our daughter’s funeral was very taxing. Due to her condition, I unknowingly developed polyhydramnios which left me feeling painfully uncomfortable. We were very uncomfortable hearing people praying for a miracle, because deep down, we didn’t want an extravagant miracle, all we wanted was to meet her alive.
At times, it was hard to remember why we chose to carry her. But in those darkest moments, it would come back to us.
She was created in love; she was carried with love and she would spend her whole Earthly life knowing nothing but love. She is our daughter and deserves to live the life she was given. She has a purpose, and our duty as parents is to help carry out her purpose.
At 32 weeks precisely, I went into labor due to the polyhydramnios. I was 9 cm dilated when we arrived at the hospital. Everything happened so quickly, but our family and friends were able to be at the hospital with us.
Annie was born alive and lived for a miraculous 77 minutes.
We had a photographer capture all our precious moments, she was baptized, and tears of joy in the room were contagious. It was hard to take our eyes off Annie, but when we looked up and saw the smiles and felt the love in the room, we knew it was all worth it. Robert getting to hold Annie changed his whole perspective on the pregnancy.
During the pregnancy he was so focused on helping me cope physically and emotionally, it didn’t allow him much time to attach himself to Annie. All of that changed when he gazed into her eyes and held her that first time. He now had two daughters. Annie hadn’t only touched our lives, but the lives of all our friends and family as well. There is so much detail to her birth story and how perfectly everything played out, it’s hard to think it happened all on its own.
Before her birth, we planned to donate Annie’s organs, as we thought that would give purpose to her life. However, at 32 weeks, we were unable to do that. Instead, we donated her DNA to an anencephaly research study at Duke University. The study is ongoing to determine if anencephaly occurs from environmental or genetic causes. There still isn’t an answer, but it helps to know that our Annie lives on, not only in our hearts but to help figure out a cause and hopefully prevent this from happening to other families.
Three years later, it is still sometimes hard to comprehend just how much joy Annie brought to our lives. How can there be so much joy after such sorrow?
Of course, we miss her and there’s always going to be an empty spot at the table, but Annie is in our hearts, her pictures are displayed in our home, she is still talked about and loved abundantly. Her presence is still very much alive. We could never imagine our lives without Annie in it. Annie is a part of our family. Although the time we had with her was short, it was worth every second of carrying her and worth every tear shed just to meet her. I cannot imagine what our life would be like without having met Annie. She truly changed us, for the better.
About Robert and Kelly Henke
Robert and Kelly Henke have been married since 2012. They first became involved in Share after the loss of their daughter Annie. Since then, they have become a companion couple for others who have endured the loss of their baby. Together they have five children-Molly, 5; an early miscarriage in 2015; Annie, who was born and passed in 2016; Robby, 1; and a new baby due in March 2020. They enjoy camping, game nights, and hiking. They reside in Warrenton, MO.