LAFAYETTE, La. — When Ashley Shirley, 28, answers the phone, it's clear something heavy is weighing on her mind.
“Is now a good time to talk?” I ask. “I can call you back during a calmer moment.”
“No,” she says. “Now’s OK. We’re just leaving a retina specialist, and we got some pretty devastating news. … We’re just trying to process everything.”
Ashley, a mother of four from
Doctors broke the news that she's blind.
Under normal circumstances, this would be a devastating blow, powerful enough to rock any family to its core.
But not the Shirleys.
When Ashley was pregnant with Jocelyn, she and her husband, Ronnie, were told their daughter had a lethal birth defect. Chances of survival outside the womb were virtually nonexistent.
When Jocelyn was born alive — and seemingly normal — doctors were stunned.
This baby’s journey has been nothing short of miraculous.
And nothing will break this family’s faith in seeing the bigger picture.
A complete family
Ashley and Ronnie Shirley thought their family felt complete when they had their third child in December of 2014.
They didn’t expect to have any more children, but the following Thanksgiving, Ashley had a familiar feeling.
“I was preparing Thanksgiving dinner, and I was just so nauseous,” she says. “I had a feeling I was pregnant. About a week later, I decided to take a test, and it was positive.”
They were surprised — but over the moon and welcoming a new addition.
Deadly diagnosis
Ashley’s pregnancy was progressing fine, and all tests were normal. At her 13-week ultrasound, the baby was measuring a little small, but doctors reassured her that it wasn't anything worth concern.
“Sometimes, they just measure a tad behind,” Ashley says. “We didn’t think anything of it, really.”
But everything changed just a few weeks later.
“At my 20-week ultrasound, they told us things didn’t look right so they sent us to a high-risk doctor,” Ashley recalls.
A maternal-fetal specialist confirmed the baby’s arms and legs were measuring three to four weeks behind. Her femur bones were bowed, her chest cavity was very small, and she was missing a portion of her brain called the corpus callosum.
Their baby was diagnosed with skeletal dysplasia, a condition to which many refer as “dwarfism.” There are more than 250 variations, so it was impossible to pinpoint which form she had.
Because Ashley had a very low level of fluids, an amniocentesis was ruled out, as it would pose too much of a risk.
“As she continued to grow, they said it would keep progressing, getting worse and worse,” Ashley says. “Around 32 or 33 weeks, they started noticing just how small her chest cavity was — more red flags that it would be lethal.”
Ashley and Ronnie were told their baby would most likely die.
Facing their fears
“Her lungs weren’t forming normally because her chest cavity was so small,” Ashley says. "Every week, I would go back, and they would look and say the same thing. They didn’t know what to expect, but by the looks of it, they couldn’t even say whether she’d come out breathing.”
Instead of planning for her baby’s arrival, Ashley began arranging her unborn daughter’s funeral.
“I finally got up the nerve to contact a funeral home,” she says. “I wanted to have her transported back to family in Cincinnati. I had to make some seriously hard phone calls to prepare — we were praying for the best, trusting God, but also had to prepare ourselves for the worst.”
Ashley contacted a photography company called Now I Lay Me Down to Sleep, which specializes in capturing the delivery of babies who aren’t expected to live.
From then on out, it was a waiting game.
On July 7, at 37 weeks pregnant, Ashley had a scheduled c-section.
“I was super nervous,” she says. “I almost passed out twice because I was so anxious. All I can remember is my husband holding my hand. He laid his forehead on mine, and we were praying. All I could do was plead with God to let her come out screaming, breathing. It felt like an eternity. It was so quiet, you could hear a pin drop.”
Finally, from behind the sheet, Ashley heard a tiny whimper that turned into a giant scream.
Everyone was in shock, and Ashley and Ronnie cried, while giving thanks to God.
A neonatal doctor came in to assess baby Jocelyn.
“He said to my husband, ‘I came to see a baby with many abnormalities, and I am looking at a completely normal-looking baby.’”
Doctors did a thorough examination, and the results left them lost for words.
No explanation
“The part of her brain that showed up missing, it was there,” Ashley recalls. “These are things I saw with my own eyes on the ultrasound. Her legs were showing up completely bowed, and they came out normal. The biggest miracle was that even though her chest cavity was small and her heart was large, she was able to breathe. She was only on oxygen for maybe six hours.”
There was no explanation for this medical miracle.
“Our doctor kept saying, ‘Where did we go wrong? Did we miss something?’ I know all people are not believers, but I just say she’s a miracle of God. I saw with my own eyes what doctors saw. Yes, she has minor problems — but she’s alive.
“Yes, she has a few things going on, and yes, we got some really bad news (today) — but she’s alive,” Ashley says. “I have had a couple breakdowns, and it’s still hard because you want the best for your baby. When you get such life-changing news, it’s devastating, but we’re just holding onto hope, and we know that God has us all in his hands.”
This mother has experienced every emotion on the spectrum, from miraculous highs to life-changing lows. What advice does she have for others who may be walking down a similar road?
“Coming from someone who has had to walk through that,” Ashley says, “there’s not really words you can give someone. I think people deal differently, so I just think you have to live in the moment, get through the moment. You can’t worry about tomorrow — just get through that moment … until you have to face what’s really happening.
“I don’t know that I could have gotten through it without my faith.”
