Editor’s Note: Maybe you have stumbled upon this post because you’re searching for answers … your baby in womb has been diagnosed with a terminal condition, and now you are faced with either carrying the child to term or terminating the pregnancy. Before making any decisions, please do at least the following: read Molly’s story below and watch this video. Peace of Christ be with you. ~ L.S.
Carrying a baby with a lethal condition to full-term
Brad and I were expecting our first child and received some potentially devastating news at our 20-week ultrasound on November 11, 2005. Up to that point, the pregnancy was textbook. We had been joyfully anticipating the arrival of our new baby and all the things that go with being first-time expectant parents.
It was an amazing experience to catch a glimpse of our baby with the ultrasound. The baby’s arms, legs, and head — he or she looked perfect. A few minutes into our ultrasound, however, the technician’s demeanor changed. She became really quiet, very short with answers to our questions, and then excused herself saying she was going to talk to the doctor. After what seemed like hours, the doctor finally came in and explained to us that the measurements were off and the baby had a potentially lethal condition. They scheduled an appointment to see a specialist the next day and then sent us home.
The unknown was hard for both of us to comprehend. That night was one of the longest of our lives.
I vividly remember that next morning in the waiting room, pleading with God, telling him I would do ANYTHING to make this a bad dream. We were called back to an exam room for an ultrasound and shortly into the scan the doctor came in to get a look at the baby. After our experience with the first ultrasound, we learned that when a doctor comes into the room, it’s generally not good news.
The doctor confirmed that our baby had a lethal genetic condition — thanatophoric dysplasia — a severe skeletal disorder characterized by extremely short limbs and folds of extra skin on the arms and legs. The term thanatophoric is Greek for “death bearing.” Infants with thanatophoric dysplasia are usually stillborn or die shortly after birth from respiratory failure.
Time stood still and I could literally feel my heart drop. We were devastated. They took us to a private room where we were given our options.
- Option #1: Abort the pregnancy right there and then.
- Option #2: Continue on carrying the baby as if it were a typical pregnancy with a little more monitoring.
My immediate reactions: How could I abort this baby? I could feel him or her moving and growing … How could I end this pregnancy, one that we wanted and waited our entire lives to experience?
Our lives were turned upside down. Our families came to our home that afternoon and we cried more than I can imagine anyone has cried before. Brad and I had previously decided not to find out the sex of our baby until delivery but under these circumstances decided we should know. Given Brad nor I could manage a complete sentence, my sister called the doctor’s office and found out our baby was a girl.
So now back to our options. How do we make this life-altering decision? Most of the men in our family wondered how I could go on carrying a baby girl that we were told would not survive. We were handed a pamphlet from the doctor about a perinatal hospice program at our hospital, so we decided to contact the nurse. We talked to her about our baby and our choices. We were told that we could not have the baby at Mercy Hospital (a Catholic hospital) if we chose to abort the pregnancy because of the hospital’s pro-life beliefs. That made it seem wrong. And I am Catholic. That was one of many signs.
I began to wish we never even had that ultrasound, and that we could have continued on thinking everything was fine. How could we end a life? What if the doctors were somehow wrong? How would we ever know?
We called the deacon who married us and asked him to come to our home. Shortly after he arrived and heard what was going on, we began to discuss what we would do. While we referred to ending the pregnancy as termination, he called it abortion. I was so mad. I would NEVER have an abortion. But this was different. (Or was it?). That word, “abortion,” offended all of us so much that my dad asked the deacon to stop using it when talking about our little girl. (As Brad and I are writing this now, it seems so ridiculous that we even felt that way.) We became so angry with the deacon and the Church for not even considering our feelings in this unimaginable situation. (We now realize how selfish that was!) Before he left, he prayed over both of us. I can’t remember his exact words, but I do remember that both Brad and I began to shake and cry even more. When the prayer was over, a sense of peace came over both of us. I looked at Brad and he looked at me. We both knew it was God’s will, not ours. We knew what we were going to do. Let it be. Give our baby girl a life, whatever that looked like.
Something changed in us during that prayer. This did not by any means indicate a smooth road ahead, it was anything but. Over the next four months we had so many highs and lows (honestly more lows than highs), but we tried to keep up a positive outlook by giving our baby girl a life through experiencing everything we could with her. I ate everything that little kids love, mostly sweets and desserts — and she seemed to love cheesecake and Dairy Queen the most! We celebrated Thanksgiving and Christmas and tried to focus on the fact that she was alive and healthy while protected in my womb. Brad bonded by talking to her and feeling her move.
As the delivery date approached, we became more anxious. It was hard to keep positive when strangers would ask me about my pregnancy. I constantly had a battle of what to tell people — should I just pretend that everything was ok? Or do I just blurt out that our baby was going to die? No one wants to hear that, but it was the reality. Part of me hoped that maybe, just maybe, the doctors were wrong and that God had a miracle in the making. Maybe our baby girl would live.
We were induced at 37-weeks. Our family was there to welcome her, along with our priest and deacon. Through hospice we were able to have a separate room, and our favorite hospice nurse was with us throughout the entire labor and delivery. It was so bittersweet: on one hand we were excited to meet our little girl, but we knew that it would be a quick “hello” for now. On the other I wanted to keep her with us for as long as I could. We were scared of what was going to happen.
The labor was long and strenuous. It was such a heavy day but the atmosphere was peaceful. We tried to joke around and laugh as we wanted her birthday to be a day of celebration. We wanted to have memories to look back on and smile.
Sophia Marie was born on March 22, 2006, at 10:28 p.m. and took her first and only breath in the loving arms of her daddy. She was baptized immediately with our family present, and we prayed the Lord’s Prayer. I remember thinking how lucky we were to have our family there with us. My prayer had been answered — Sophia wasn’t in any pain; she seemed at peace. I was so tired but wanted to stay up and hold her for as long as I could. We wanted to remember everything about her: her hands, her chubby little feet, her face. I didn’t ever want to forget. We gave her a bath and dressed her in the outfit and matching hair bow we had bought for her. We took family pictures. I fell asleep with her in my arms and the next morning we said goodbye to her for the last time.
Looking back, Brad and I can’t even fathom what our lives would be like if we had chosen to abort. We still celebrate Sophia’s life and know that she continues to have an impact on many. We are now blessed with two amazing little boys and are grateful for every moment with them. And I thank God everyday for giving us that moment of clarity in our darkest time for guiding us to make the right choice.
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