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 from either sides of the family and we had one healthy pregnancy & child already, so trisomy 18 was not anywhere on our radar as we waited for our 20 week ultrasound apt. We had opted out of any testing or ultrasounds sooner since the pregnancy seemed to be going well and we weren’t anticipating any concerns.
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, but also very vague. We were told to not worry and wait for a follow up 3D ultrasound at a larger hospital. We also decided to opt in for the genetic testing blood work test at this time. It came back 8 days later, 99.9% trisomy 18 positive. All else negative. We were waiting for a meeting with a neonatologist at the time of the results. The genetic counselor reassured us the ultrasound findings and blood work were minimal and the testing was only 3% likely to be right, very low, but we were still very concerned by this time and had googled more than we should have.
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 that was not functioning, clenched fists, legs that couldn’t move separately, 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. We were given some options, we could terminate now by early induction, or wait and terminate by induction at anytime even up to his due date, or we could plan a delivery on his due date with full life saving measures, or we could plan a delivery on his due date with only comfort measures.
We were told if we did try to carry to term and he was born alive he’d likely suffocate from the small chin, but most likely it would be the fragile heart giving out under the pressure of labor that takes him should we choose that option.
This was the hardest part for my husband and I. We didn’t want to terminate early. Our baby was alive and had no signs of suffering right now, he seemed comfortable in the womb and we’d let him live there as long as he wanted and God gave us, but we were scared if we chose this road, he’d be born alive and struggle. We chose it anyway, it felt right to us to let life take its natural course, no matter the outcome. We would face it with faith and all the love and comfort we could give him, even if we lost him.
So, we continued the pregnancy with nothing more than check ups 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. We wanted to wait and let labor happen naturally but my fluid levels were very high at this point and he was moving less. We were afraid if we waited he might pass away from the fluid pressure on his heart. We felt right inducing on the due date, it was the best we could do and so we decided to book the date and choose only comfort measures at his delivery. 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.
They started my induction on January 14th at 40 weeks and 1 day. we had decided to name our baby Benjamin Elisha, there was a song on the radio at the time and the lyrics sang, “just ask the man who was thrown on the bones of Elisha if there is anything God can’t do.” The lyrics refer to the story in the Bible where the prophet Elisha has been dead and buried for years, but grave robbers dig up his bones to hide a murder they had committed. They throw the murder victim in the grave with Elisha and the minute the body touches Elisha’s dried up bones, the victim comes back to life! Because Elisha’s bones still held so much of the Lord’s power.
Our boy, Ben, was still moving a lot at induction. We did not monitor his heart however during labor because if it began to drop I was afraid I’d be too emotional for a safe labor, but I prayed we’d get to meet him & my husband prayed he wouldn’t suffer. My contractions were regular, but I could not feel them. The dr broke my water at 2000 hours and sure enough my water was excessive, my stomach was almost flat after and showed us just how little our baby boy was.
I started feeling my contractions right away, so I asked for an epidural. I had been told to get an epidural to help ease Ben’s pain as well. We delivered our beautiful baby boy alive at 2227 hours! Benjamin Elisha was in our arms, he lived 52 seconds only, he never cried but I saw light and movement 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 and how sorry I was. I would’ve done anything to heal him, raise him, take his place, to change the whole situation, but those are things I can’t make happen.
He was with Jesus before we could even worry if he was in pain. My husband’s biggest prayer was answered & I got to hold him alive for one second, my biggest prayer was answered.
He was 4lbs 12oz and 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 but we were overwhelmed with his little love for those 52 seconds we got with him. It was worth all the pain, emotionally and physically and even though I wouldn’t have wanted it that way, it was more than we were expecting, and we were grateful.
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.
The video link for his funeral service is here as well if you’d like to watch it: https://youtu.be/5Np6Ekq6KK0
I miss him everyday, think about him everyday, and our family is both less and more because we had him. 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 you and your baby. 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, trisomy or not. I pray if you have lived one of these stories you believe in hope again. Since this entry, my husband and I have had another healthy baby. Jacob Jedidiah, Jedidiah after the son given to David in the Bible after the loss of his first son with Bethsheba. We have our Lily, our Ben and our JJ and we are hoping for more and comforted to know we have only walked the Trisomy journey once.
After losing ben a friend of mine told me, “I can’t imagine your pain,” and that was one of the most comforting things I heard from friends and family, if you are reading this for a family member and don’t know what to say.
I love you more than I could ever say and wish I could hold you everyday – until I see you again my little Ben.