First of all, before I begin our story of love and loss, I want to reach out and tell you how sorry I am that you are finding yourself here, reading these stories. I’m assuming it’s because you are facing the same choices or have already faced it like we have. I wish I could hug you mama. I know this is probably the darkest time of your life. Right now I’m sure your heart is shattered, broken into a million pieces, and you have no idea how it’s ever going to be put back together. I know the pain. I know the sleep deprivation. I know the middle of the night obsessive internet searching of medical terms, prognosis, and statistics. I know what it feels like to hit rock bottom and beg and plead with God to tell you what to do, to let you wake up from this nightmare. I know the confusion of feeling your baby kick so strongly inside of you, and wonder how it can even be possible that your baby is so sick. I’m so sorry. I hope that you can find at least a little bit of comfort and peace with this small community of families who have faced the same horrible decisions as us.
Our story begins in March 2021. We found out we were expecting or fifth baby! After a few days of shock, we started to get excited and I knew truly in my heart that our family was complete with this baby.
On July 13, my husband and I went to our anatomy scan. We saw our little baby moving and wiggling around. The tech kept going back and measuring baby’s head, which gave me a little anxiety. Even with my intuition telling me something was wrong, I shrugged it to the side and just assumed it was my normal mama anxiety. We didn’t find out the gender.
The next day was the last normal day of my life, until our world completely changed that afternoon. A nurse from the maternal fetal medicine clinic called and told me that the doctor from maternal fetal medicine wanted to set up an appointment with us ASAP. I asked why? With a shocked and terrified expression in her voice she apologized that nobody had called me, and told me that she was going to call a doctor right away to talk to me over the phone.
My world became suddenly dark. I knew this was not good news. Something was wrong with our baby and it was bad. My phone rang about five minutes later as my husband pulled into the driveway. I ran up to him and told him there was something wrong with our baby and the doctor was about to tell us what it was. I answered the phone on speaker phone. The physician explained to us that it looked like our baby had holoprosencephaly. A term that I had never heard of, even though I have worked in obstetrics for 12 years. Through a voice that could hardly talk and tears that wouldn’t stop, I asked the physician if this was something that was compatible with life. He said that he was very sorry but if it is what he suspects but it’s very serious. He wanted us to come in the next morning for a more detailed ultrasound.
That night I don’t think I slept more than a few hours, as most of my time was researching the internet about this condition. Reading stories, statistics, life expectancy. I couldn’t believe it. This had to be a mistake.
The next morning we had an hour and a half ultrasound. I cried the entire ultrasound while my husband held onto me. After the ultrasound we went into a separate room and had two phone meetings, which I had my cell phone on speaker so my husband and Joy, the perinatal bereavement coordinator could also be included in the conversation. We first talked to the genetics counselor about the findings. To be honest I don’t remember much of our conversation with her at that time except our options at further testing.
At this point I was 20 weeks +4 days. We talked about options of ending the pregnancy, which including surgical termination, or being induced. Our option to be induced would be taken away from us at 22+0 due to hospital policy. After that if we wanted to end the pregnancy we would have to go to an abortion clinic. I couldn’t believe we are having this conversation.
The next phone call was with the maternal fetal medicine doctor. He told us that the ultrasound findings were actually worse than what was seen during our first anatomy scan. He diagnosed our baby with semi-lobar holosproencephaly, but told us that he actually suspected that as the baby grew more over the next couple weeks it would be alobar…the worst type with the worst prognosis. He also said that our baby had a cleft lip and palate, eyes that were very close together, and overlapping fingers. She had no nasal bone. All highly suspected signs of trisomy 13.
Our baby also had some significant cardiac abnormalities, the ventricles were asymmetrical and he suspected that there was significant heart problems. He explained to us the statistics of babies with trisomy 13. He told us that he highly believed our baby would pass away before birth, or shortly after birth. He also explained our prognosis of the holoprosenchephaly alone, without T13. Both were incompatible with life.
Our world crashed down on that day. I never cried so intensely in my life. I’m 33 years old and have unexpectedly lost both of my parents, but this pain was different. This pain was primal. I was sure that I was going to die from grief. That my heart would just give out.
Ultimately, we knew right away that we could not let our baby suffer. If there was no hope for life, or the only hope was for a very short life filled with seizures, respiratory distress, diabetes insipidus, deafness, and blindness, and still dying, how could we choose that for our baby? How could we survive watching our baby suffer? How could we take our kids through that heartbreaking journey and watch their baby sibling die? We couldn’t. The most horrible choice to ever have to make as a parent, was the only choice we felt was the most compassionate and kind thing we could do for our sweet baby.
We chose the induction. It was important for me to give birth, and hold our baby. We didn’t have time to wait for an amniocentesis to confirm the T13 since that would take weeks. Even without T13 diagnosis our baby’s prognosis was black and white. There wasn’t anything could save our baby from dying.
The time in between our decision and the induction date was horrible. Everyday was grey. We cried all day long while still trying to hold it together for our other children. Our sweet baby moved so much and my husband got to feel through my belly for the first time. The entire ultrasound report came through on the online portal. We found out from that report that our baby was a girl. Which is exactly what we wanted, after a healthy baby. We wanted a little sister for our only daughter. And here she was, but she couldn’t live.
On July 21 we went into the hospital. I was 21+2. I prayed for God to send us a compassionate nurse, which he did. Her name was Kendra and words can never explain what she did for us and held us through on that day. We had the amniocentesis then and started the induction process.
At 11am I took the first pills to induce labor. It started to get very painful around 5 pm. I asked for some morphine which helped tremendously. Our baby girl was born that night at 7:23pm. She was born alive, but still. I took her from the midwife’s hands after she cut the cord and held her to my chest skin to skin. She had a heartbeat but didn’t move but a few small movements and never tried to breathe.
Her heart beat for 38 minutes as we held her and kissed her and told her we loved her and she can go, she doesn’t have to fight. We both listened to her with a stethoscope. We told her she would always be loved and we were so sorry she had this happen to her. At 8:01pm the nurse listened and said she was “calling it at 8:01”. I asked her if I could listen for myself. One last time I held the tiny stethoscope to my tiny baby’s chest. I listened as hard as I could for too long, then looked at my husband and told him she was gone. Our baby had died…right there in my hands. She went so peaceful.
She weighed 10 oz and was 10in long. We held her for hours that night and had a photographer come take pictures for us. The next morning we held her for hours more and had the Chaplin pray with us and he baptized her. It was the hardest thing to hand her over to the nurse for the last time, knowing we would never see or hold her again. She was the most beautiful little girl. She had the softest cheeks. Her name is Willow Rebecca.
Our amniocentesis case back positive for trisomy 13, as expected. Just “bad luck”.
It has been 2 1/2 weeks since we said goodbye to our little girl. So far this has been the most horrible, darkest time of our lives. A month ago our whole life was different. I was a different person then. I will never be able to go back to being that person I was before we lost Willow.
The amount of compassion, empathy, and kindness that has been shown to us is indescribable. We’ve had so much love and support around us that I’m actually blown away. We don’t tell everybody all the circumstances about our Willow. But those that we do tell, tell us that we made the right decision. They know the intense love that we have for our daughter. I wasn’t expecting that. When I thought about ending our pregnancy I felt like I was a horrible person at first. But until you find yourself in this situation, you can never understand how a decision like this made can be made out of pure love.
I would give anything to have had Willow be able to live a life without complications and pain and suffering and a chance at survival. I miss her so terribly much. I miss her moving inside of my womb. I miss the sweet weight of her in my arms. I miss kissing her sweet face. I miss being with her every second of the day.
I was already seeing a therapist weekly for issues with my parents and childhood trauma. Having a therapist at this time has been so important. But the days are strange. It’s truly a rollercoaster and the stages of grief are all here and there and everywhere and sometimes all in the same hour. Those first few days afterwards I was in survival mode. One minute after the next. While the searing pain is letting up, I know that healing from losing Willow will never end.
I want to end my story with saying something very important. I know you love your baby. Don’t let anyone or any source tell you differently. You are here, reading the stories, because you were/are faced with the hardest decision that you will ever have to make in your entire life. It’s a decision out of love. Your love for your baby is so fierce and strong that you are willing to take on pain and suffering so your sweet baby doesn’t have too.
Sarah is a mother of 5, including her precious baby girl Willow that was diagnosed with trisomy 13. As a labor and delivery nurse, she had helped many families bring new life into the world. She would have never imagined being a TFMR mama.