Inside the stressful world of a preemie mom
Bookmark and Share
Jan 30, 2015  |  Vote 0    0

Inside the stressful world of a preemie mom

Premature birth can be a shock. What’s less talked about is that the trauma doesn’t end at the hospital door. A mother on the frontlines is committed to getting stressed families the help they need


When her water broke, Christine Kluczynski had just started wearing maternity clothes. Motherhood was supposed to be three-and-a-half months away.

This can’t be happening, she told herself. It was early December of 2012, not yet winter. Her twins weren’t due until spring.

The new mother’s first glimpse of her tiny daughters was through a fortress of glass, tubes, wires, beeping monitors. It was the high-risk neonatal intensive care unit at Sunnybrook Health Sciences Centre, 60 kilometres from her Burlington home. She’d been transferred there in a harried ambulance ride before labour started. Once it did, everything happened so fast that her husband Chris couldn’t get there in time.

Christine, 31, is a mental health nurse. But that didn’t prepare her for the emotional toll of the traumatic delivery — pushing one baby out, and a caesarean for the second — followed by weeks of watching her newborns, Maja and Alexis, struggle to survive.

Born at 24 weeks gestation, they were resuscitated multiple times. They had brain bleeds. In the first month, both had surgery to close ducts in their hearts.

Christine had never imagined herself having to master the intricacies of ventilator flow rates, central lines and chest tubes for her own newborns. Her dream of motherhood had not involved commuting to hospital for four-and-a half months.

And how could she have known that hard times wouldn’t be left behind when they left the neonatal intensive care unit (NICU). Or that two years later, with her toddlers babbling and clambering onto her lap, she would still be haunted by memories.

The babies, born Dec. 4, 2012, had their long-awaited homecoming more than four months later, on April 23, 2013. Maja, one pound seven ounces at birth, and Alexis, one pound nine, had grown to the size of full-term newborns and were finally off their feeding tubes.

But mingled with the Kluczynskis’ relief and excitement came the shock of a new reality. Christine faced the prospect of being primary caregiver for two fragile infants still dependent on oxygen machines.

Away from the other parents, nurses and social workers who understood, she felt alone and buffeted by waves of anxiety and despair about what she and her babies had gone through, and fear for their futures.

“All of those feelings don’t necessarily surface in the NICU,” she says on a weekend morning as the girls, now age 2, play at her feet in their family room.

“In the hospital, you’re on autopilot. You’re not thinking, you’re just surviving.”

Christine was grateful for daily help from her parents and mother-in-law while Chris, an automotive manufacturing engineer, was at work. But it was overwhelming.

The piercing alarms on the oxygen saturation monitors were part of the routine for more than a year. They sounded whenever the sensors, strapped to the babies’ feet, indicated oxygen intake had fallen, often when the babies had wriggled and displaced the nasal prongs. Christine and Chris took turns sleeping beside them every night.

There were two or three medical appointments a week all over the GTA. Vision and hearing tests, respiratory checkups, cardiology appointments, pediatrician visits to monitor growth and development. Wherever they went, the two oxygen tanks and monitors went too.

So did the anxiety that plagued their sleep-deprived mother. And the “what ifs” about whether her daughters, who both have permanent hearing loss and hearing aids, might also have developmental delays, learning disabilities or other conditions that affect premature babies at higher rates.

Moms and tots groups are often the first place new mothers go to find companionship. But the idea of bringing babies with compromised immune systems into a room of other children was scary. A simple cold could put her girls back in hospital.

Besides, her experience of motherhood bore little resemblance to most of the other moms. Preemie moms distinguish between chronological age and “corrected” age (actual age minus the number of weeks prematurity). Other moms don’t think twice about comparing notes on their kids milestones — when they roll over, sleep through the night and how much they tip the scales.

One mother peeking in the stroller had quizzed her on her girls’ ages and why Maja was so small. She couldn’t face the questions or the distress again.

As a result, “I’ve pretty much been a hermit,” she says.

Weekly visits from two members of Halton Region’s infant development team couldn’t come soon enough.

“I can’t tell you how much I sat and poured my heart out.”

Soon Christine was being treated for depression, anxiety and post-traumatic stress. She was recently diagnosed with fibromyalgia, which causes widespread musculoskeletal pain and is often associated with stress and fatigue.

Not long ago, Christine logged on to a private online group for preemie moms to seek guidance. Her girls turned 2 in December and are doing well, she wrote in a post. And she had gone back to work last summer. Yet she was feeling panicked and overwhelmed.

The response, in posted comments and emails, made it clear she was not alone. Mothers applauded her willingness to speak openly about things too seldom shared. Many acknowledged the flashbacks and waves of despair that can resurface when children’s birthdays come around.

“I know exactly what you’re going through,” wrote one mother. Others added, “we just don’t talk about it enough” and “most of the world thinks prematurity ends when you leave the NICU.”

For some moms, the emotional rollercoaster had lasted for years. What struck everyone, though, was the comfort from connecting with others who understood.

The feedback indicated that in health care, the community and even among well-intentioned family and friends, the colossal stress on preemie parents is seldom acknowledged or addressed.

And it reaffirmed Christine’s commitment to doing something about it. Months ago, she began sending letters to local health agencies and politicians advocating for mental health services aimed specifically at parents of preemies. She’d like to see a mental health nurse on every neonatal intensive care unit, and a network of counselors and peers to help them transition from hospital to home.

Medical care for preterm babies is top notch at hospitals like Sunnybrook, she says. Nurses and social workers do what they can to provide emotional support between their many other demands.

But designated mental health care is “a missing piece.” Even more important, she’d like to see community programs afterwards that would include home visits from people with personal experience, delivered through partnerships created between hospitals and public health units.

The way she sees it, helping parents also helps the children. Parental mental health and stress have a huge impact on kids, and can hinder everything from attachment to learning, development and well-being. So why not give both vulnerable moms and their preemies the best chance possible.

One of every 12 babies in Canada is premature, meaning they are born at least three weeks early. The rate has jumped 30 per cent over the last two decades, largely a result of more women giving birth at older ages and using assisted reproduction. And the number born at 25 weeks or less has shot up 50 per cent in the last three years. Full-term is considered 40 weeks for single babies and 37 for twins.

Advances in technology and medical care mean the prognosis for these babies is better than ever before. But often overlooked is the impact on parents, and particularly the mental health of moms, says Katharina Staub of Edmonton, founder of the Canadian Premature Babies Foundation.

Lack of emotional support in hospital and after discharge was a major finding in the group’s 2014 report Premature Birth in Canada: An Environmental Scan.

The foundation recently launched a closed Facebook group with trained peer facilitators, The goal is to also add a telephone help line and then playgroup-based peer support across the country, says Staub.

This month, in partnership with neonatology researchers, they began surveying parents of preemies discharged from Edmonton-area hospitals in the last year about their biggest emotional challenges and what would have helped. That will lay the groundwork for developing services.

“You have your baby and all you’re concerned about is the health of your child,” says Staub, who recalls the surreal weeks in hospital after delivering twins at 27 weeks, pumping breast milk and trying to bond with babies she couldn’t hold.

Studies show moms of infants in the NICU experience higher rates of postpartum depression. Many women struggle with anxiety, post-traumatic stress symptoms and guilt over what they might have done differently in pregnancy, even when doctors reassure them it’s not their fault.

When moms do get referred to mental health specialists, often they can’t cope with leaving their babies to get help for themselves. So having a mental health nurse on neonatal wards could make a huge difference, she says.

It can be hard on marriages and siblings. Staub recalls how difficult it was to understand her husband’s different way of coping, by burying himself in work and his fascination with the technology on the neonatal unit.

Chris Kluczynski remembers feeling helpless as a dad. “You just love them so much but you’re so scared for them.”

Once home, parents face another hurdle caring for vulnerable infants, which comes with isolation. Many preemies have sleep difficulties, vulnerable immune systems, eating problems and reflux that cause frequent vomiting. They are on a different developmental trajectory. So moms who are exhausted and nervous about exposing their babies to germs or facing the inevitable questions keep to themselves.

“You feel alone and you’re not sure you’re doing a good job,” says Staub, whose twins are now 6. “I really feel there is a huge gap there.”

In Canada, there are a couple of informal support groups in Ottawa and Vancouver. But she cites the free Nurture Groups run by Australia’s Miracle Babies Foundation as a worthy model. Groups, aimed at parents and kids up to age 6, get together every two weeks, with adults swapping strategies and socializing while their children play. The network also harnesses the expertise of therapists and other health care professionals who provide advice to help parents cope with day-to-day demands of caring for preemies through the early years.

Last month, two major Toronto hospitals, Sunnybrook and Mount Sinai, announced a new free program to help parents transition from hospital to home, beginning with online webinars in five languages and then extending to in-person meetings. The announcement noted that families of preterm babies “are more vulnerable to increased anxiety, marriage breakdown, parental guilt, and parenting stress following time in the NICU.”

On a Saturday morning, winter sunshine lights up the family room in the Kluczynskis’ home.

Alexis, 25 pounds and steady on her feet, shouts “Emo, Emo!” as she points to her favourite Elmo stuffie.

Across the room, Maja smiles from her mother’s arms while her dad makes grilled cheese for lunch. She’s 21 pounds and on the verge of walking, quickly cruising the furniture to keep up with her sister.

Christine rejoices in every new word they utter and each milestone they achieve. But their second birthday last month brought painful memories to the surface: the panicky ambulance ride as she texted work colleagues to cancel meetings; a voice in the operating room asking her what kind of lifesaving interventions she wanted; her own voice crying out “what did I have?” after Maja was born, and then being put to sleep for a C-section before she heard the answer.

And how she and Chris, shell-shocked in the recovery room, urgently named their newborns before even laying eyes on them, watching the resident write the names carefully on her hand in ink to relay them to the neonatal team.

Last June, Christine returned to work at the Centre for Addiction and Mental Health in Hamilton while Chris’s mother comes to the house to care for her granddaughters.

She has made the girls shadow boxes full of memorabilia from their early months. The frames display their hand-knit preemie hats, tiny baby footprints, hospital bracelets and blankets. Pink for Maja, purple for Alexis.

Christine hopes she can mark her memories in a different way, by merging her personal and professional experience to help other parents going through the same fears and triumphs.

“People think that when you walk out the hospital doors, everything is fine. But it’s not.”

Toronto Star

Bookmark and Share

(0) Comment

Join The Conversation Sign Up Login

In Your Neighbourhood Today