More than 1,300 Florida parents had babies die before 1st birthday. Doctors race to find out why.

As baby Isaac took his last breaths, his parents began to sing to their firstborn.

You call me out upon the waters

The great unknown where feet may fail

And there I find You in the mystery

In oceans deep my faith will stand

Sixteen days after bringing him into this world, Andia and Keith Kolakowski were trying to let Isaac go.

“We were saying, ‘God, just take him peacefully.’ And then a few seconds later we were like, ‘God, you know what, can we have our son back?’ It was just this wrestling the whole time,” said Andia, who went into labor when she was only 23 weeks pregnant.

But Isaac went fast.

“And we just sat there with him and I just entered twilight. Even now, even almost two years later, I find myself in that space of twilight,” said Andia in a recent interview while holding her 10-month old son Holden sat on her lap. “I have another son, you know?”

In 2017, when Isaac died, nearly 1,360 other parents in Florida lost their babies before a first birthday, which in medical terms is called infant mortality. It’s an important health measure because it’s one of the significant indicators of the overall health of the society.

“Infant mortality is a great window to how our system works to give babies a healthy life,” said Brian Kirk, director of Maternal and Child Health at March of Dimes.

No one factor can explain why some babies die before their first birthday.

Birth defects, premature birth or low-birth weight, pregnancy complications, sudden infant death syndrome and injuries such as suffocation are the leading causes of babies’ death in the first year of their lives, according to the Centers for Disease Control and Prevention.

In Andia’s case, the cause was an incompetent cervix, also called cervical insufficiency. Her cervix — the opening to her womb — was too weak to hold the pregnancy and opened too soon. She had no other risk factors.

But in some other cases, social and economic factors, such as education deficits, poverty, inadequate access to transportation, poor nutrition and lack of access to prenatal care can also increase the risk of infant mortality.

“You already start out at a deficit, like low birth weight or prematurity, and you go home with a mother who’s running, trying to do service jobs, trying to manage three other kids, and the housing may not be too together, and the food for sure, and the stress” — all these factors can increase the odds of infant mortality, said Jennie Joseph, a licensed midwife, a nationally known expert and the founder of Commonsense Childbirth, The Birth Place and Easy Access Clinic in Orlando.

Florida remains among the states that have not expanded Medicaid. A recent report from Georgetown University Center for Children and Families showed that Medicaid coverage, especially for minority and low-income women, plays a key role in improving the health of moms and babies.

In addition, a growing body of research is showing that chronic stress — also called ‘weathering’ — that results from racism can have negative biological impact on women of color.

Studies have shown that when it comes to having low-birth-weight babies, African-born black women have a similar risk compared with U.S.-born white women. But the odds of having a low-birth-weight baby are higher for black women who are born in the United States.

In the United States and in Florida, black babies are more than twice as likely to die in the first year of life than white babies.

But in Orange County those differences are even larger.

Black babies in Orange County were four times more likely to die in the first year of life than white babies in 2017, according to the latest data available from the Florida Department of Health. That’s the largest racial gap in the county has experienced in the past decade.

In numbers, 69 of 4,500 black babies died in the first year of life that year in 2017, compared with 41 of 10,800 white babies. Or when expressed in rates, 15.5 black babies in 1,000 live births died in the first year, compared with 3.8 white babies.

Meanwhile, that gap has slightly narrowed in neighboring Lake, Osceola and Seminole counties in the past 10 years.

To be sure, overall infant mortality rates have dropped in Florida during the past decade, but not to a great degree, becoming a source of concern and frustration for doctors who care of these tiny babies.

The overall infant mortality rate for all babies in Florida was 7.2 deaths for 1,000 live births in 2008 and dropped to 6.1 in 2017.

“Infant mortality [rates] have been going down, then they kind of creep up. The prematurity rates haven’t changed much. And with all the advances in technology and medicine, we haven’t been able to move the needle,” said Dr. Anthony Orsini, a neonatologist at Orlando Health Winnie Palmer Hospital for Women & Babies. “If you want to put a dent in prematurity and infant mortality, let’s start getting to women before they get pregnant and see if we can improve their health.”

In the coming months, the Orlando Sentinel will continue to explore infant and maternal mortality in Central Florida, focusing on trends and statistics. Our reporting will highlight local and statewide programs that have successfully reduced the rates of infant and maternal mortality and explore the potential solutions to reducing the overall infant mortality rates and improving the health of the community.

NICU journal

“my boys,” is what Andia wrote under a recent photo she posted on Instagram, sitting by Isaac’s grave with Holden on her lap.

“man I miss this kid so much. I wish I could be holding both of my boys today. see Isaac make his brother laugh. it is still odd and sometimes nightmarish that from then on this would be my life, my story. and I hope to honor it.,” she wrote.

Isaac was born on May 15, 2017, at 1.3 pounds. During his 16 days in the NICU, Andia managed to hold him for all of five hours.

“We were thrust into this world of parenthood for the first time, but our son was not home,” said Keith, 33, a civil engineer. “He was at the hospital. And he was not just in a regular hospital bed. He was behind the glass.”

After Isaac was born, the couple read and researched everything they could. They found lots of clinical and technical information.

“But what we really needed more than anything was a spiritual guide to shepherd us on this journey,” said Keith. “We were wrestling with this otherness of hospital-oriented parenthood. I think we were in somewhat of a crisis state emotionally.”

The couple started to process what had just happened only after they buried Isaac.

Andia took to Instagram, where she found other moms who shared her grief. And little by little an idea began percolating in her mind.

“I had all these photos and I had no books to put them in. Every baby book out there, there’s no way to put them in there because all they say is, you know, your baby’s first this, or their first blah, blah, blah. Like all these firsts that do not relate to a child in the NICU,” said Andia.

So she decided to create a journal for NICU parents.

A graphic designer by training, Andia put her skills to use to design each page.

“It’s a photo prompt journal. And there are writing prompts. But they’re all in there to help parents navigate through their experience, as well as the emotions that they might be feeling,” said Andia. “I’m inviting them to see the small, fleeting moments as something beautiful, and something worth capturing.”

Instead of putting in milestones for baby’s growth and progress, she created a page with what looks like a vintage map of star constellations. One constellation is for hands on time. Another for breast feeding. And another for weight gain.

“It’s designed less like a checklist or linear sort of guide through the NICU and it’s more like, you made it through the first 24 hours and just being able to mark that down,” Andia said.

And she reminds parents to take photos of their babies, because it’s easy to forget that in the whirlwind of nights and days in the NICU.

One of her favorite photos of Isaac is the one that today hangs in the couple’s living room wall and shows his face, which most of the time was hidden behind tubes and medical tapes.

The nurses were rearranging the tubes and asked Andia and Keith if they wanted to see his face. Of course they did.

“And my husband caught this image of him opening his eyes and starting to smile. And so that was the first time we saw his whole face without anything attached. It was the sweetest and I was so happy we got that,” said Andia.

Isaac died two days later.

The couple is taking reservations and raising money so that they can print more copies to sell the book online. They decided not to shop for a publisher, because they wanted to maintain the journal as they designed it.

They’ve titled the journal Catching Meteorites. It’s a name inspired by a poem they wrote together before Isaac was born.

Then you caught our eyes, a meteorite

blazing streaks across our minds at your arrival.

And while we long for you at a distance,

your tiny movements stir our love at its foundation.

This is the first story in a series about maternal and infant mortality and women’s access to care in Central Florida as part of Reporting Fellowship on Health Care Performance, which is supported by the Commonwealth Fund and sponsored by the Association of Health Care Journalists. If you have a story you’d like to share, please contact her at nmiller@orlandosentinel.com or 321-710-7947.

The song the Kolakowskis sang to their dying son was Oceans (Where Feet May Fail) by the worship band Hillsong UNITED.