Disclaimer: Opinions expressed in this guest post are solely those of the guest author.
We don’t know what she will be able to feel or control.
She may be blind.
She probably won’t hear very well.
She probably won’t be able to eat from her mouth.
“Sometimes these babies’ lungs don’t talk to their brains when they are born.”
Claims like these are the last you ever wish to hear when you’re pregnant. Yet my husband and I found ourselves facing specialist after specialist, being run through the potentials.
We “know” so much nowadays, and although great technological advancements have resulted in so much good — they have been a means of lifesaving treatment for our daughter — I think it’s easy to forget we don’t hold all the knowledge, or power, in our hands.
The Christmas season of 2023 was upon my husband, our two young boys, and me when we found out we were pregnant with our third baby. Though we’d been trying for number three, the double pink lines still stunned us.
This pregnancy, however, was different from the start.
“Something felt off”
Extreme mental struggles surfaced in the first trimester—turmoil so unlike the pregnancies with the boys. And joy erupted at the anatomy scan as we heard, “It’s a girl!” like music to our ears. But I was no rookie. Something felt off about the silence of the sonographer. I pushed the uneasy feeling aside.
Photo of baby Lauren Rose’s ultrasound (Courtesy of Nielsen family)
Spring came, and the day after Easter, our midwife’s voice crackled through the phone.
“They found some… concerning things on the anatomy scan.”
That evening our lovely midwives faced us in our living room.
“Spina Bifida… where the spinal column is not completely closed.”
“Hydrocephalus… fluid built up in the brain.”
Words poured forth, and though our minds understood, our hearts couldn’t quite keep up. We’d already named her — Laurel Rose. It means “Victory Rose” and refers to Jesus rising from the grave. Indeed, one of the first things I believe I heard from God after the midwife’s call that morning was, “Remember her name.”
Breaking the news to family and friends, we prayed, they prayed, and many more prayed for us. We’d found ourselves in a canyon-carved desert, where we could barely see our next step. But the Good Shepherd doesn’t abandon His sheep in the wild. He leads them through it.
At a specialist, the findings were confirmed. “We have a plan,” he said.
Just like that, we made for a bigger city — the end goal to undergo fetal surgery. Laurel’s back would be repaired while she was still in the womb. We met a team of professionals, receiving a crash course in these complex conditions. We were even starting to “get used to” the idea of them.
Baby Lauren Rose is born (Photo courtesy of the Nielsen family)
“How Your stories end”
But on the morning after a required MRI for surgery approval, we sat across from a kind doctor as he said, “I’m afraid this is much worse.” He spoke of the new diagnosis results from the MRI reading: “Semilobar Holoprosencephaly.” The doctor drew a diagram of a brain that had not fully split into two hemispheres.
What had seemed a manageable storm to us erupted into a full-blown hurricane.
An hour later, we sat with yet another specialist. I remember thinking, by God’s grace, “Where is this going? What are You planning? I know how Your stories end — and they don’t end like this.” Still, I’d never felt so numb as we sat in the waiting room afterward.
Back home, God continued to sustain us — step by step, minute by minute. Sometimes that was all we could handle, but that was all we needed to. Time and again, I came across stories of wonderful outcomes from seemingly dark prognoses. Furthermore, personal research led me to highly doubt this new diagnosis.
So, despite it all, including continuing mental struggles, I asked my mom and sister to plan a baby shower. We would live with family closer to the hospitals for the rest of the pregnancy.
Scans were frequent now, and due to an enlarged head size, they decided Laurel had to come early. At 33 weeks — the same number of years Jesus walked this earth — Laurel Rose was delivered via C-section.
They rushed her to another room as protocol dictated. Because of how she was delivered, we hadn’t heard her cry and knew nothing for minutes, but there was a peace upon my husband and me.
Then…
“You want to see her, dad?” a doctor said cheerily. My husband jumped up and walked over just as the song “See a Victory” — like her name — began to blast out loud on my shuffled playlist.
She was wide-eyed as they rolled her by, and I was able to tell her I loved her.
Baby Lauren Rose (Photo courtesy of the Nielsen family)
The day she was born, Laurel underwent both brain and back surgery. A successful NICU stay began.
As you may imagine, it was to our great shock when a second MRI in the NICU did not retract the Holoprosencephaly diagnosis, but shifted it to the Alobar — or “most severe” — form.
But what had these days been teaching us?
“And which of you by being anxious can add a single hour to his span of life?” (Matthew 6:27.)
“No wisdom, no understanding, no counsel can avail against the LORD.” (Proverbs 21:30.)
“God is love.” (1 John 4:16)
Focusing on today
After a good deal of processing, I took simple but wise advice to heart: just focus on today. Only God holds the keys to tomorrow.
Laurel was released from the NICU the day before her original due date. Now, after many “todays,” she is nearly a year old.
Baby Lauren Rose (Photo courtesy of the Nielsen family)
She has control and feeling of her entire body. She isn’t blind. Her hearing is fine.
She absolutely loves her bottles — and baby food even more.
She is still working on many things, yes, but progressing wonderfully.
For all the tears and fears and claims, we’re learning that it’s only God Who has the final say.
You can’t know any one person’s future by anything other than living it.
