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  • Writer's pictureMother of Wilde

"Our Little Boy Had Trisomy 13, Which Doctors Told Us Was 'Incompatible With Life'."

I found out I was pregnant in July, a couple of months after experiencing an early miscarriage. My husband, Jarrett, and I were thrilled.

This baby was an answered prayer.

We told our families soon after, who were just as excited as we were.

My first prenatal appointment and ultrasound came, and things really started to get real. Seeing our baby on ultrasound was such an unexplainable feeling.

Our baby was the size of a raspberry, less than an inch in length, but we were already so in love.

Sonogram of baby with Trisomy 13

Several weeks later, we were given unexpected news.

Some abnormal lab work suggested that our baby could have a chromosomal abnormality called Trisomy 13.

Suddenly, our joy turned to fear. We were scared of this diagnosis and everything that came with it.

Neither of us knew much at all about Trisomy 13, but a quick Google search told us way more than we ever wanted to know. We felt scared to feel excitement or get attached to this baby, especially knowing that our time with him might be pretty limited.

What should’ve been such an exciting time quickly became a time that felt pretty dark.

19 weeks into my pregnancy, an amniocentesis confirmed our greatest fears.

Our little boy had a definitive diagnosis of a complete Trisomy 13, which doctors told us was considered “incompatible with life”.

We were told there was a high probability that I would miscarry at some point in my pregnancy. We were told I could possibly carry to term and then deliver a baby that wasn’t breathing at all.

We were told there was really no way to know for sure how long Myles would live after delivery. It could be seconds, hours, weeks, months.

We were also told that we had the option to terminate the pregnancy, “for medical reasons”. Jarrett and I both knew that termination wasn’t something we wanted to pursue.

We are still so thankful that the doctors walking alongside us never questioned that choice; they never pushed us to change our minds.

Myles’s story could’ve looked a lot different; but we knew that God’s plan for him was so much greater.

We knew that this little boy’s life was meaningful and full of purpose, regardless of any diagnosis he’d been given.

At just shy of 35 weeks, we met Myles.

Newborn baby boy with Trisomy 13 in the hospital

It was too soon—a lot sooner than were expecting. But we know that God wasn’t at all surprised by the timing of things. Everything about Myles’s birthday, down to the medical team that was there to take care of us, was perfectly orchestrated by God.

When Myles was born, he was blue, didn’t have much of a respiratory effort, and his heart rate was low. We knew this was a possibility, but it was pretty difficult to come to terms with in the moment.

I felt hopeless; we needed more time.

The respiratory therapist laid him on my chest, and the sweetest, smallest cry filled the room less than a minute later. His color improved, his heart rate came up, his breathing got better.

Myles went on to live for 12 hours and 59 minutes; we soaked up every single second.

We always say that no amount of time with him would’ve ever been enough, but we are so thankful that in that short time we got to hold him, introduce him to his grandparents and some of his aunts and uncles, read him a book, and fall in love with his little personality.

He weighed less than 4 pounds, had 11 perfect fingers and 12 perfect toes, a head full of golden blonde hair, and, because of his cleft lip and palate, he had two teeth that had already erupted.

Newborn baby boy with Trisomy 13 bundled up in swaddle

He was precious and he was such a fighter. Our lives are forever changed because of Myles.

It would be so easy to hear his story and feel saddened by it. It sounds painful, and trust me, there are times when it is.

But we don’t want Myles’s life to be marked by sadness. he brought us immeasurable joy from the moment we first found out I was pregnant.

We know that we will continue to find joy in who he was and the miracle that was his life.

“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” - Psalm 139:13-139:14

family at Abel Speaks family retreat

This blog was written by Emily Logan in Baton Rouge, Louisiana. She has been with her husband, Jarrett, for ten years and married for six. Together they have 3 children - Myles, Lainey, and Peyton.

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