The Ongoing Crisis of Premature Birth 

Smaller than a can of beans

Here we are, finally home,” Jamie Aron says. He’s pointing to a photo on his phone screen, the one taken by a delivery man a little after Thanksgiving twenty-two years ago. The picture documents the Aron family’s first normal Tuesday in 7 months. In it, the family—Jamie, his wife Lori, son Zac, their two newborn twins—gather on their front lawn. They pose beside the two six foot tall storks the delivery man had just unloaded from his truck. 

Baby Josh’s oxygen tube stands out in stark contrast against Jamie’s red sweater. It weaves from his left ear into his nostrils and along his opposite shoulder, where he rests a sleepy head. The mid-afternoon light is trapped inside tubes running across his stubby blue-clad right thigh and the strands hanging like long wavy hair underneath Jamie’s arm. Josh looks angelic, little body aglow. His medical equipment resembles a pair of wings.

Jamie describes the delivery man as “a country sort of guy.” He remembers that the day was windless, but a loud sound of sniffles came from behind the camera lens and the delivery man kept having to mop his eyes with the edge of his sleeve. His eyes first started welling when Jamie informed him that the size descriptions on the storks were accurate. Before he left, he asked to pray to Jesus with this Jewish family. His voice still echoes in Jaime’s head. 

“Dear lord,” he said, “these boys were born smaller than a can of beans.”

Jake and Josh were born four months too soon, and seven months before they came home to a set of proud cardboard birds and even prouder parents. These cans of beans would outlast every expiration date. Today, Jake and Josh are seniors in college, excited and scared in equal parts to graduate. They both love baseball, and Jake even broke a Guinness world record for Most Baseballs Ground-Fielded in One Minute.   

Many premature babies are not so lucky. Preterm birth and its related health challenges–trouble breathing, immunodeficiencies, brain bleeds, dying intestine tissue, and heart failure–account for 36% of infant deaths in the US. If a baby is lucky enough to make it out of the Neonatal Intensive Care Unit (NICU), they will often come home with disabilities ranging from developmental delays to chronic respiratory problems to vision loss and hearing impairment. The longer a baby stays in the NICU, the more vulnerable they are to lifelong consequences. Given their 200+ days at the hospital, as Jake Aron puts it, he is beyond grateful for the simple fact of being a “normal person.”

Physicians believe that nearly 50 percent of preterm births could be prevented. Yet two decades since the Aron twins’ birth, the statistics of preterm birth have only increased. As of 2023, 1 out of every 10 babies come dangerously early at 21 to 36 weeks gestation. In other words, every year, approximately 380,548 babies find themselves rushed directly from delivery room to NICU. In recent data published by March of Dimes–a national preterm advocacy and support group–America’s preterm birth grade, assigned in context with the rest of the world, fell around a D+. Texas, where Jake and Josh opened their eyes for the first time, came in even lower.

The financial burden of premature birth is enormous: the government spends about $25.5 billion each year on NICU care. One night in the NICU can cost up to $20,000.

The emotional toll, on the other hand, can’t be quantified. Parents experience shock when their babies land in the NICU, and this trauma can linger for the rest of their lives. “It never really leaves you,” says Kara Gilardi, associate vice president of NICU Family Support at March of Dimes. Gilardi was herself a premature baby. 

This permeating sense of shock explains why now, in an interview about that time 20 years ago, Jaime Aron frequently chokes on his words and pauses to push his black glasses up to rub his eyes. For such a common birth outcome, it's surprising just how surprised parents feel. 

Though Dr. Dennery already knew how to place a nasal cannula, monitor a mechanical ventilator, read a pulse oximeter, and change a gastric feeding tube, most parents like Jaime have to learn for the first time. They also learn other things they’ve never needed to know before, like the fact that a laminated picture of a simple white flower amid a background of green leaves indicates the single most tragic moment in the NICU. 

The White Flower has a yellow middle and is mesmerizingly perfect. For parents, perfectly terrifying. The White Flower symbolizes that a death has occurred. Most people call the transition to death for preemies palliative care. Babies under the White Flower often suffered from severe congenital defects that would have spelled out a particularly grueling life, physicians explain. They may have been born without a brain or with a condition called Trisomy 13 or 18 or severe lung disease. 

Though they have had no control through the past couple weeks or months, their baby’s death happens on parents’ terms. Some parents want to stay in the room while staff take out their baby’s medical equipment. Others say, “do it and I’ll come back.” Sometimes parents are holding their child for the first time. Sometimes it is the first and only time this baby will be held in their life. 

Jaime remembers the day he first experienced the cloying presence of the flower. On his way out of the NICU for lunch, he passed a baby who caught his attention because of the unusual amount of people encircling her crib. When Jaime returned to the NICU and saw The White Flower on the main entrance door, his heart dropped straight through the soles of his shoes and his vision grew as foggy as if he didn’t have glasses on.“When we came back,” Jaime says and pauses. Jaime’s struggle to get the words out surprises him. “When we came back not only was no family there anymore, there was no crib” (deep breath) “There was nothing.” The only way he can verbalize what that experience was like is to point to the tears that sit in his eyes now, fresh all this time later. 

Jaime only remembers a few such stories but each one leaves him pushing his glasses onto his forehead. Jaime had obsessively read anything he could and shared optimism with a fellow NICU parent - their baby died shortly after he’d given them a passionate pep talk. On one of Josh’s last nights in the NICU, a baby underwent an emergency procedure. The family got a chance to talk to the baby and doctors quickly in the moments before. From a vantage point next to his son’s strong slumbering body, Jaime watched later as the family came back screaming and crying. 

He tries to explain why these moments form the fabric of his most painful NICU memories rather than horror scenes that featured his own kids as protagonists. “There but for the grace of God go I,” he says. In the first moments of his sons’ lives the doctors told him to take it minute by minute. Minute to minute turned into are they going to survive hour to hour. The intervals kept increasing until Jaime and his family got to seven whole months and two almost completely healthy babies. 

Almost completely healthy/ “Holy crap it's on us”

After leaving the NICU, life does not return to normal. Jaime explains that for seven months, the NICU was his and Lori’s life. They welcomed the end of that chapter, certainly. That doesn’t mean they were any more comfortable entering the next one. They didn’t know how to take care of one sick baby at home, let alone two. 

Both babies left the hospital with feeding tubes. Feedings took place every four hours day and night and included cleaning the site and cleaning the feeding bags, a 30-45 minute process. Insurance would pay for only so many bags, so Jaime and Lori reused them. In pictures from that time, the feeding tube is a dangling plastic straw-like thing attached to the baby’s stomach. Eventually, Jake and Josh upgraded to mickey buttons which look like a “nozzle on a beach ball.” Josh had the added layer of oxygen. After filing for federal disability, the government paid for limited home healthcare. But, in order to get some sleep, Jaime and Lori had to pay out of pocket for night nurses. 

At one point in his tilting world, Jaime remembers calling the NICU out of panic. This was a massive breach of the “once you leave the NICU we are no longer your doctors” rule. The crutch he pretended still existed snapped in half under a series of scolding and a banishment to his pediatrician. In other words, in one day, Jaime and Lori went from 24/7 support in the NICU to “holy crap it’s on us.” 

For Jaime, seven months meant the day before Mother’s Day until the following Thanksgiving. He swallows and smacks his lips slightly. “And oh my gosh how lucky are we.” 

“There are many moments…where I will really just be doing something like walking to class and I'll be thinking: man, I'm walking to class right now, isn't this great? I'm not supposed to be walking to class right now,” says Jake Aron, now no longer a one pound premature baby but a twenty two year old college student.

When Jake Aron laughs, you smile. He’s so earnest! When he talks, you smile. He sounds like a physical manifestation of the emotion happy. Jake is in fact bursting with gratitude (excepting, perhaps, a couple weeks ago when he nearly got crushed by midterms). Ever since his tiny preemie body entered the world having spent only 5 months in utero, he has seen life through the clear eye that most of the rest of us spend our entire lives searching for. 

People he is grateful for: his parents, doctors, nurses, March of Dimes. Reason he is grateful: “for giving me life.”

In truth, Jake doesn’t tend to think about the fact of his severe prematurity and the miracle of his survival all too often. Every once in a while he will read through the website that his dad made to keep family and friends updated on their 200+ days in the hospital and transition to home, and he will think “holy crap. This is kind of crazy.” Very occasionally (re. birthday Facebook posts), his dad will say a couple words through a sheen of tears. 

Because of their connection with March of Dimes, a national organization that centers around supporting families with preemies, Jake has collected some really cool experiences. His family participates in the March of Dimes walk every year from their home in Dallas. One time, Jake sang the national anthem in front of a crowd of 4,000. (“I am not a good singer, I don't know why they let me do all of this” ). At March of Dimes events, Jake and Josh would sometimes go onstage and tell their story. The Aron family has raised 60,000 dollars for the organization over the years. Most of this outpouring of support spurs from passionate speeches by Jake’s dad, Jaime. “I would see dad talking on stage and he would start crying,” Jake says. As he has grown up he has stopped giggling at the tears and started understanding the deep emotional pools they spring from.

“A lot of things had to go right for me to be in this position I am today. And all those things went right.” Jake knows that he will never fully understand what his parents went through. He does, however, appreciate the gravity of their experience. Occasionally the gratitude will be particularly poignant. These moments come unexpectedly - walking to class, on his birthdays, eating a chocolate cake donut, running at the gym, or even just having lunch. 

They prompt him to smile and celebrate his life. They prompt him to take pride in “being a normal person.” They prompt him to want to talk to his parents. In fact, “I'm looking forward to calling them later today and telling them how awesome they are,” he says. 

A Commentary

Thank you for reading my piece. I hope you know a little more about premature birth and how important it is that we try to address this crisis. So much pain, financial expense, PTSD, and most importantly lives could be spared if America put more thought into her systems of neonatal care and the systematic injustices that reside in them. I didn't talk about this in my piece, but huge disparities exit in premature birth for babies of minority women. For one statistic, 15% of babies born to Black women are preterm compared to 9.4% for White women. There is so much more to say about this, but I would like to now change gears to tell you a little bit about my process for this piece and why I got interested in the first place.

By the end of summer 2023, I had verbal confirmation that I could join the Dennery Lab, focused on developing therapies to protect premature babies, starting in the Fall semester. From my first zoom with her, I felt how lucky I was to be a part of her world. She is incredibly accomplished and brilliant. She believes that you should not do work that doesn’t keep you up in the middle of the night thinking. So, in some ways, I joined the lab more because of her than because of the topic. But, as each week went by and I dived further into the literature, met with her to talk about the science twice a week, and began to run experiments of my own, I grew captivated by the biological story of premature birth. I also grew increasingly interested in understanding the emotional story. I decided to talk with Dr. Dennery first, keen on understanding her perspective as a neonatologist and caretaker for these babies as well as their parents. She surprised me when she inserted that she too had a premature baby, 18 years into her career! Her experience seemed to carry a huge weight still, all these years later, and I started to wonder if she as a person who is primed every day to deal with prematurity struggled with her son’s NICU time, then how do other, less experienced, parents deal with it? Just how hard is having a premature baby? 

I found Jaime Aron through internet searching and reached out to him over email. Two weeks later (after he’d finished his triathlon training), Jaime and I met for the first time over zoom. Just like Dr. Dennery, he is a person with a lot to say. And I was a person with the most eager ears to listen. Given his emotional openess during our long call, I knew Jaime had a traumatizing experience and I knew Dr. Dennery did as well (I ended up speaking with her again about this), but in order to figure out whether this was a theme or pure coincidence, I spoke to March of Dimes expert Kara Gilardi. Gilardi sees dozens of families a day and reaffirmed how staggeringly difficult premature birth is for families. She also spoke on the unexpectedness of the experience as something that can leave you winded for decades. She spoke from experience as she herself was a premature baby. I finally rounded out my story with Jake Aron’s perspective and from the minute he started talking on our zoom call, I felt myself grinning ear to ear.