3 1/2 weeks after our 20 week anatomy scan, I was told the found cysts on our baby’s brain. Which could potentially be a marker for downs syndrome. As scary as that was, my doctor was very hopeful my baby was healthy, and things would turn out okay. He recommended we go forward with genetic blood testing.Our worst fears were confirmed when he said the genetic testing came back with a greater than 50% chance of Trisomy 18-Edwards syndrome.I think back to that day and how those words shook my pregnant body to the core and crushed the deepest parts of my soul. I was then almost 26 weeks .Thursday, September 5th was another full day of doctor appointments.We were due for an ultrasound to check on baby’s umbilical cord. And then we were to meet with the NICU team to see what they could do for our Samuel.t was just another quiet ultrasound. I couldn’t tell what they were looking at, but I could see our baby wasn’t moving. He just lay there. But I saw his heart going strong.
The tech got a few “wiggles” out of him before going and getting the doctor.
I sat up, with a lump in my throat, I said to my husband Lee, “I think he’s going to tell us to make a choice today.”
He came in, and asked to view a few things again in the room.There he told us the umbilical cord was now going backwards, and the placenta was rejecting. This being the reason he wasn’t growing. Our doctor confirmed what we already “knew”.
He said our baby maybe had a week.Maybe two weeks.
He didn’t have a crystal ball that could say for sure.
Samuel was going to die inside of me.
He was not going to be able to handle the stress of induction and delivery.
The doctor,from a medical standpoint, strongly advised against a C-Section.
There were risks to me, and still no guarantee we would meet Samuel alive.With no discussion, I looked at Lee, and looked back at our doctor, and choked out my words, “If a C-section meant a better chance of meeting him alive, that is what I want”.The harsh reality was, Samuel was going to need surgery within a week of being born. But his size wasn’t going to allow surgery for at least another month.
He wouldn’t make it.
He wouldn’t make it no matter how many tubes he was connected to.
He wouldn’t make it no matter how much love we gave him.
He wouldn’t make it.
We wanted him to be comfortable. And we also wanted him to be in our arms while he was alive.
We agreed on nothing that would mean him being away from us.That’s where we started.Before I even realized they were operating on me, the doctor says “He’s almost here”.
They started to cut the sheet down so I could see him coming.
Lee could see everything.
I heard lee choking up saying “There he is. He’s so small”Lee and I knew cutting his umbilical cord meant cutting his life line.Our lives were about to change forever.They gave Samuel oxygen through is nose, and he was stabilized.
They placed him on my chest. I was calm.
He was small.
Samuel was 1lb 7.9oz and 12.5inches long.
He had a head full of hair.His hands were clenched.
His ears were low.But boy was he beautiful. It was right after his baptism that his numbers started dropping steadily.
His oxygen tube was coming loose because of all the moisture. It needed more tape.
I held it in place while they called someone to fix it.
But when I looked back at the monitor, I could see it wasn’t helping.
I looked at Lee with such grief in my eyes. His eyes shared the same pain.
The monitor kept beeping because it was all dropping so fast.
We knew it was time.
And it was a gut wrenching feeling. the inevitable was happening.
By time they got back with the tape, I asked them to remove the oxygen.
We wanted to remember our baby without tubes and wires.We had three amazing hours (that felt like minutes) with our sweet boy.
He was so strong.
The loss of Samuel affected everyone in that room that night.Samuel was never a home town hero , and most people didn’t meet him, but I will make sure the world knows Samuel’s name.
We will tell everyone of Trisomy 18- we want everyone to know about it and we want everyone to remember Samuel.
We were once part of the 1 in 6000 statistic of Trisomy 18. The odds of us ever personally knowing someone who will have to go through this, is so very slim.We are thankful God brought Samuel into our lives.
I now have a scar to remind me daily of him.
There’s not a thing we wouldn’t have endured for Samuel.
He has forever changed our lives.