Local Parents Thankful for Each Day with Terminally Ill ‘Miracle Baby’

The couple's baby, Caroline Grace Boggs, was born with the terminal condition Trisomy 18. Read about this family's journey.

Caroline Grace Boggs can light up any room she’s in.

The adorable baby’s sweet, round face and chubby cheeks delight everyone who meets her. A happy but feisty baby, Caroline’s love for being held is only surpassed by her parents’ love of holding her, and her proud big sister Olivia, 4, and brother Henry, almost 2, never miss a chance to kiss Caroline’s fuzzy head.

Mom and dad Cressie and Bryan Boggs, of Grosse Pointe Farms, are soaking up every coo, cry and cuddle. They live joyfully in the moment but they know a darkness lurks in the shadows threatening to steal their happiness at any time.

Baby Caroline was born with Trisomy 18, a terminal condition caused by an error in cell division that occurs in about 1 in 6,000 live births. Only 10 to 20 percent of these babies survive to see their first birthdays, though some children live much longer, according to the Support Organization for Trisomy 18, 13 and Related Disorders.

The family found out about Caroline’s condition after a blood test Cressie had at 24 weeks pregnant.

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“I lost it. I was crying,” Boggs says. Knowing that some babies with Trisomy 18 die in utero, they longed to at least have the chance to meet their baby girl.
“‘Incompatible with life’ is the term you always hear with Trisomy babies,” she says. “Our goal was to meet her. However much time we had we didn’t know, but we wanted to meet her.”

The family began celebrating each completed week of pregnancy with a “birthday party” of sorts for Caroline with cake and singing – a special time for Henry and especially Olivia, who understood she had a sister on the way.

“It was just something for them,” Boggs says. “I wanted Olivia to remember her sister.”

But Caroline made it to her due date and beyond. Boggs was induced at 41 weeks and baby Caroline impressed doctors with high Apgar scores and strong breathing when she was born on May 11.

With Trisomy 18, each baby’s situation is unique. Caroline has a large hole in her heart but she also has pulmonary stenosis – a problem in itself but it currently serves as a restrictor and works to Caroline’s benefit for the moment. Surgery is too risky now but may be a possibility in the future, Boggs says.

“We’ve always said from the very beginning that we were following her lead,” she says. “If she’s six or seven months and she’s gaining weight and doing well, as a family we can’t deny her the opportunity to fix her heart.”

Caroline uses a feeding tube due to a weak suck and swallow, which an occupational therapist is helping with, but she has no airway issues. She has facial paralysis and seems to be blind and deaf on her left side, but she is still able to hear and see, Boggs says.

“We’re very fortunate. Besides the feeding tube she’s like any other newborn,” she says of Caroline’s day-to-day care, though Boggs finds herself feeling more like a nervous first-time mom all over again. “That has taken me a couple months to adjust to.”

The Boggs are settling into life as a family of five and feeling grateful for every day. Their home is bright and lively with laughter from Olivia, who loves to dote on Caroline and say how beautiful her sister is, and Henry, a rough-and-tumble boy who has recently learned the word “baby” and loves to stare at his little sister.
Caroline is a happy baby and tolerates her many doctor appointments, nurse visits and therapy sessions well.

“She’s pretty calm and content, but she’s very feisty if you push her buttons,” Boggs says, looking down and rubbing Caroline’s cheek. “You have to have a little fire in you” to handle this, she tells her daughter.

She’s also very observant and has started tracking people with her blue eyes. While her siblings share their mom’s blonde hair, baby Caroline seems to get her dark locks from her dad – her favorite person to cuddle, along with mom.

“She loves, loves to be held,” Boggs smiles. “She’s a mommy’s girl, and she’s a daddy’s girl too.”

The celebrations continue now with a birthday party for Caroline each month, and the family is also starting to feel more comfortable taking her out of the house for family events.

“Since we don’t know what the future holds, I want to make sure that we’re building memories with her so that our kids will remember,” Boggs says.

Cressie and Bryan are grateful for their “miracle baby,” as they call her, and say she has already taught them much about life and appreciating the small things.

“It just makes you really open your eyes that everything is important. Playing in the backyard, or when I watch my kids and they’re laughing and having fun, it calms me. I worry less about if my house is clean or are we on time, are my kids wearing the right shoes,” she says. “You look around and you just look at everybody. Everybody’s doing OK – we’re doing OK.”

Boggs says she still breaks down often but it gets easier. She tries to keep in mind the advice a friend gave her to “keep the flashlight pointed down.”

“You have to appreciate the moments and not worry about what’s going to happen or I’m going to be constantly worried about what’s happening,” she says. It helps that she and Bryan make such a good team. “I think we balance each other out. He’s very calm. He never once doubted the fact that we were going to meet her.”

Though the length of baby Caroline’s life is uncertain, her fate is not. Caroline was born into a family so rich in warmth that not an hour passes that someone isn’t loving on her and rejoicing in every sweet moment spent together. She is showered with affection from grandparents and has a team of friends and family in her corner. She will always be loved, wanted and adored.

As Cressie wrote to Caroline in her blog: “We couldn’t be prouder. Our time with you is so precious. You have taught us that life is ALL about the small things. The time we spend together. Each milestone you reach is truly a blessing. We will continue to celebrate.”

To follow Caroline’s story, visit caringbridge.org/visit/sweetcarolinegrace or facebook.com/sweetcarolinegrace. Plus, read about other parents who blog as a way to cope with their struggles.

Photo by Lauren Jeziorski

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