On April 4th 2020, my husband and I found out we were expecting our second baby. We had one little girl, just a year and two months old at the time. I was 27 years old, my husband 33. No history of any genetic concerns and one history of a healthy beautiful girl, so trisomy 18 was not anywhere on our radar as we waited for our 20 week ultrasound apt.
Sept. 1st rolled around and I went for my anatomy scan, 19 weeks and 4 days pregnant at the time, we found out we were having a boy! We also were told his scan showed a small chin, a darker left kidney and two bilateral choroid plexus cysts. All findings were compatible with trisomy 18, the doctor shared. I am a nurse and was aware how devastating this diagnosis would be if it were true. We opted for the genetic testing just three days later, something we had declined earlier on because we knew we wouldn’t terminate anyway.
The genetic testing came back 8 days later, 99.9% trisomy 18 positive. All else negative. We were waiting for an appointment with a bigger hospital for a 3D ultrasound and a meeting with a neonatologist. The genetic counselor reassured us the ultrasound findings were minimal and the testing was only 3% likely to be right, very low, but we were still very concerned by this time.
On Sept. 23rd and 23 weeks pregnant we went for our 3D ultrasound. The findings were truly devastating. Our very loved little boy was already less than 1% the size he should have been. He had a horseshoe kidney, no functioning, clenched fists, and a large septal ventricular heart defect – among many other findings. The doctor said the heart defect was lethal and the baby would be a miracle to survive even the week and he’d likely never survive labor. Crushed beyond measure, we were given the option to terminate by early induction. We were also told if we did try to carry to term and he was born alive he’d likely suffocate to death from the small chin. While we couldn’t even imagine watching our baby suffer, we knew we couldn’t terminate. We believe and trust in the Lord and our baby boy’s life was not ours to take.
We continued the pregnancy with nothing more than check ups for me that consisted of doppler heart checks for our baby, measurements of my fundus and basic vital signs.
Our very strong little boy made it all the way, at 39 weeks and 1 day my doctor offered induction. By this point, I knew something was more wrong than right. I could feel I had so much extra fluid and our sweet boy would slush around in my tummy. I felt terrible pain carrying all the extra fluid and could even barely walk to the bathroom at night having to crawl on occasions. I also had endured 9 months of hyperemesis gravaudia, which I also had with my daughter. By the time this appointment and offer had come around I was very much at the end of my physical strength. Unsure if we were ready to say goodbye my husband and I decided to take the induction date at 40 weeks gestation. We had carried our boy to term, prayed and fasted and cried for 6 months and more importantly our baby boy had lived this long. He was still moving in my tummy but much less by these last 3 weeks. I imagine the fluid making it harder on his little heart as well, although we had no ultrasound to confirm my feelings.
They started my induction on January 14th at 1300 hours. I was 40 weeks pregnant and our baby boy was still moving some. We did not monitor the baby’s heart during labor but prayed he’d be a miracle or at least not suffer as we had been fearing for so long now. My contractions were regular as the monitor showed, however, I could not feel them. I asked the doctor to break my water knowing something was wrong. He broke my water at 2000 hours and sure enough my water was excessive. The doctor was shocked, water ran and ran out of me for minutes, running off the bed and all over the floor. By the time it all drained my stomach was all but flat.
I started feeling my contractions right away, strong and close together as the monitor showed. We delivered our beautiful baby boy alive at 2227 hours! Benjamin Elisha was a miracle, he lived 52 seconds according to doctor records, he never cried but I saw light in his eyes for a second as I hugged him tight and kissed him on my chest and told him how much I loved him. He was with Jesus, as my amazing husband comforted me in my tears, before we could even worry if he was hurting.
He was 4lbs 12oz, 17 and ¾ inches long; he was completely beautiful. He was warm and felt heavier in my arms than I had expected. I am so grateful I was able to hug him and kiss him alive and tell him I loved him. 52 seconds is never enough for parents but we are overwhelmed with love for him and those 52 seconds we got with him. It was worth all the pain, emotionally and physically.
I held him all night, sleeping just one night with my amazing little strong baby boy in my arms, his weight an endless comfort to my broken heart. We left his body with the hospital after 12 hrs and he qualified for a heart valve transplant for another baby.
When we first received this diagnosis in September, I read every story on this website twice, desperate for some hope, desperate for some clue as to what we’d go through. I found comfort in reading of other babies and loving families that went before. I pray if you have found yourself here, reading our baby boy’s story you find some comfort as well. Although, I know it’s not the hope you are really looking for. I spent 6 months devastated and scared but begging God for help and wisdom and strength, and only in looking back can I see he did give it to me.
My husband and I have no regrets. Every second with our boy worth the struggle. I pray if you are facing this you know you aren’t alone and Christ will and has gone before as well. I pray your baby is a great comfort to your heart and his or her purposes are carried out completely, even if they are as short as 9 months and 52 seconds. Babies are a blessing beyond measure, trisomy or not. I pray if you have lived one of these stories you believe in hope again, as I am struggling to now. I pray Christ is enough for us all as we journey through so much love and loss.