An emergency C-section was definitely not part of Ashley Dalgarno’s birth plan. The Calgary mom was thrilled to be expecting twin girls—she and her husband would celebrate the summer of 2015 as a family of four. Then, 20 weeks into her pregnancy, Dalgarno had a scare when she was involved in a fender-bender. “I was checked out by paramedics, and they said everything was OK.”
She was advised to go straight to the hospital if she experienced any cramping or just wasn’t feeling right and to also make an appointment to see her doctor the next day, which she did. “Hearing their little heartbeats made me a little less anxious,” she says.
Then came abdominal cramping later that night, so Dalgarno and her mother rushed to the ER, where tests showed the pregnancy was fine, much to the expectant mom’s relief. “It was just super scary, because you don’t know what the outcome will be.”
So when Dalgarno experienced similar but more intense cramping just a month later, she knew something was wrong. “I was at work, so I drove myself to the hospital,” she says. She was soon told that she was already three centimetres dilated—she’d experienced an unexplained membrane rupture, the cause of one-third to one-fourth of preterm deliveries. “I just lost it,” recalls Dalgarno. “I was so upset with myself. And the only thing that was going through my mind was, Did I do anything wrong? Why is this happening to me? They ended up calling my husband and telling him he needed to get there as soon as possible.”
Dalgarno was admitted for perinatal care and received two injections of antenatal steroids to speed the development of her babies’ lungs, in hopes of giving them a fighting chance at survival.
What she was told over the next few hours was difficult to hear. “I remember the doctor saying that 50 to 70 percent of 25-weekers survive, and if they survive, all the health problems that could happen, like having underdeveloped lungs leading to chronic lung disease or brain bleeds, which can lead to cerebral palsy. Or that they may be blind or deaf, or both,” says Dalgarno. “All I did was look at Cody, my husband, and say, ‘Hopefully we can hold on maybe one more day, one more week.”
The World Health Organization defines preterm birth as a baby born alive before 37 completed weeks of gestation, and preterm babies are divided into three categories based on gestational age: moderate to late preterm is from 32 to less than 37 completed weeks; very preterm is 28 to less than 32 weeks; and extremely preterm is under 28 weeks. This definition is debated, with some doctors and the Canadian Paediatric Society (CPS) defining micropreemies as babies born before 26 weeks gestation and others basing the definition on birth weight (for example, a baby weighing less than about 1,000 grams, or two pounds and three ounces).
About eight percent of babies born in Canada are premature, according to the most recent Canadian Premature Babies Foundation report, published in 2014, and of those, 14 percent were extremely preterm.
For extreme preemies, every additional day of gestation matters. The Canadian Neonatal Network collects data from 29 health centres across the country, providing a snapshot of preemie survival rates. Of the preemies admitted to these hospitals in 2013, the survival rate to discharge was 94 percent for babies born at 28 completed weeks of gestation, 85 percent at 26 weeks, 68 percent at 24 weeks and 51 percent at 23 weeks. (It’s important to note that these rates don’t take into account delivery room deaths, which significantly lowers the overall survival rate for babies born before 24 weeks.)
The good news: “Over the past 10 years, the pendulum has moved toward survival at a lower gestational age,” says Horacio Osiovich, division head of neonatology at BC Women’s Hospital and Health Centre.
Just a generation ago, there would have been few joyous homecomings for babies born at 25 weeks or less. Thanks to advancements in technology, research and medication, the minimum age at which there’s a reasonable possibility for a newborn to survive outside the uterus—known as the threshold of viability—has edged down to 23 weeks in Canada and the US, and just 22 weeks in Japan.
Still, babies born between 23 weeks and 24 weeks and six days gestation (or 25 weeks and six days, depending on who you ask) are commonly referred to as being in the “grey zone” of viability. And there’s an ongoing ethical debate about whether resuscitation and treatment of babies born in the grey zone is in the best interests of the child.
Extremely premature babies—especially those born before 26 weeks—often have severe long-term challenges, including cerebral palsy (affecting up to 20 percent), cognitive impairments, and vision or hearing impairment.
“The question, ‘Should we do something just because we can?’ often arises,” says Jessica Faust, a social worker in the neonatal intensive care unit (NICU) at Toronto’s The Hospital for Sick Children. Her hospital’s NICU operates on a shared-decision model, where parents and healthcare professionals make decisions together about what’s best for babies, with support from the bioethics department. But policies vary across the country.
The CPS guideline on counselling and management for extremely preterm infants currently recommends a non-intervention approach and palliative care (such as providing warmth and pain relief) for those born at up to 22 weeks and six days, as survival “remains uncommon.” For babies born at 23 to 25 weeks and six days, it suggests a personalized and informed shared decision-making approach when providing counselling to parents. But the CPS says its guideline is under review and will be revised to reflect new evidence in survival rates, long-term outcomes and quality of life; consideration of factors besides gestational age that may impact the likelihood of survival and adverse outcomes; and “the need to further and better emphasize the importance of informed shared decision-making, and how best to reach a consensual decision.”
Katharina Staub, executive director and founder of the Canadian Premature Babies Foundation, supports a more broad approach to micropreemie care. “Communication should be personalized and in reference to each unique baby in the context of his or her own family, not simplified to a number of completed weeks of gestation,” she says.
Jennifer Toye, a neonatologist at Edmonton’s Stollery Children’s Hospital, echoes this personalized approach: “Are there some situations where the chance of survival is so low that resuscitation is not recommended? Yes. Are there some situations where the chance of survival is so good that resuscitation is universally recommended? Yes,” she says.
In addition to gestational age, factors that affect survival include birth weight, multiples, complications during pregnancy and whether the mother received antenatal steroids. Of course, the family’s wishes, input and values are essential when making decisions about resuscitation.
“Quality of life is an important point of discussion, as each family may perceive this differently and possibly differently from the medical team,” says Toye. “This is a complex concept to explain, because everyone has a personal definition, but that definition is not necessarily fixed, and it is influenced by experiences and personal values.”
In Canada, there are 30 Level III neonatal intensive care units helping to finish the work started in the womb. They’re reserved for the most vulnerable babies—including micropreemies—who require special attention such as mechanical ventilation support, surgery, intensive observation and immediate access to specialty medical consultants like cardiologists, surgeons and neurologists.
Early intervention is helping improve preemie outcomes, says Aideen Moore, a neonatologist at the The Hospital for Sick Children. Women with high-risk pregnancies (including multiples, gestational diabetes, placenta previa, high blood pressure and preterm rupture of membranes) are transferred to high-risk obstetrical units. Expectant moms who go into labour before 34 weeks are given antenatal steroids primarily to rapidly mature the baby’s lungs. And acute-care transport teams are designed to stabilize and transport extreme preemies from community hospitals to a Level III NICU.
Medical approaches are also evolving. It used to be thought that every baby born before 28 weeks needed surfactant (a fatty liquid that lubricates lung air sacs) and needed to be intubated and put on a ventilator to do the bulk of their breathing for them. But this often led to lung infections and more lung damage. Now, a less traumatic ventilation treatment called continuous positive airway pressure (CPAP)—in which air, with or without extra oxygen, is given to the infant through small soft tubes in the nose—helps provide breathing support, and surfactant can be given with CPAP or without.
“I would say that 25-weekers are now doing really well mostly because we try to be the least invasive as possible,” says Bernard Thébaud, a neonatologist at Ottawa’s Children’s Hospital of Eastern Ontario and professor of pediatrics at the University of Ottawa. “Over time, we’ve learned how to use therapies better. Even five years ago we were convinced every baby under 28 weeks needed to be intubated,” he says. “Today the child is observed, eventually placed on CPAP and given surfactant, and intubated and put on a ventilator only if it’s required due to worsening respiratory distress. This general change in philosophy of treatment has led to better outcomes.”
Beyond survival, the other big goal for neonatologists is to ensure babies avoid serious problems. Preemies have a greater risk of intellectual impairment, neurodevelopmental disorders such as autism and ADHD, learning disabilities, motor problems, reduced lung function, hearing loss, and vision impairment due to retinopathy of prematurity, an overgrowth of blood vessels in the retina.
Extreme preemies are also more prone to intraventricular hemorrhage (IVH), bleeding in the brain that can damage or destroy areas crucial to development and motor function. This occurs most frequently in the 48 to 72 hours after birth and is more common in babies who are in respiratory distress or have fluctuating blood pressure.
IVH is one of the factors responsible for cerebral palsy, a neurological disorder caused by abnormal development of the brain or damage to the developing brain areas that control movement and muscle coordination.
Not every baby will have these issues, and even when they do, “the degree of these problems varies from baby to baby,” says Osiovich. “Some babies do extremely well; some of the babies have difficulties.”
Every NICU in Canada has its own process to let parents know what challenges they’ll be facing and to provide support. “Parents often feel overwhelmed when they’re given all the information on day one, so we usually try to give them essential information immediately after birth, and then we formally sit down with them on day two or three and again on day seven—or more frequently if needed,” says Prakesh Shah, a neonatologist at Mount Sinai Hospital in Toronto.
Generally, doctors are available whenever parents have questions—which is essential, given how tenuous a micropreemie’s health can be. “At times, the days were so long,” recalls Dalgarno. “Especially the bad days, when you were running on empty just to be by your baby’s side as they are fighting for their life, and you can’t imagine what the outcome is going to be.”
For extreme preemies, the NICU stay stretches into months, so parents are not only kept informed but also encouraged to take an active role in their child’s daily life.
A new medical model has emerged in NICUs across North America that’s changing the course of care for the tiniest of patients: Family-centred care is becoming the norm rather than the exception. “Families are considered part of our medical team,” says Osiovich. “In the past, we found parents didn’t have a lot of control. Now we encourage them to participate in the care of their newborn.”
This means parents themselves are charting their baby’s progress and presenting it to medical staff at rounds, taking part in group education sessions and individualized bedside learning, feeding, bathing and changing their baby—something that just wasn’t done even 10 years ago in some NICUs—and making sure they have skin-to-skin contact with baby, also known as Kangaroo Mother Care.
“I think the most exciting moment for me was when I heard my girls cry for the first time,” says Dalgarno. “I was holding Payton, and I was putting her back in the incubator after Kangaroo Care, and her little hands gripped my robe and she let out a cry like she didn’t want to be put back. And I didn’t want to put her back after I heard her!”
Family-centred care is good for babies, too: It’s been shown to decrease length of hospital stays, enhance infant-parent attachment, improve long-term outcomes, improve infant weight gain and boost breastfeeding rates, according to the Canadian Premature Babies Foundation.
Many hospitals are also changing the design of the NICU to make it easier for families to be as present as possible. Across the country, NICUs are planning to move from an open bay design—with an average of 40 to 60 square feet of space per baby and only curtains for privacy—to single-family rooms with about 160 square feet.
These rooms will reduce the risk of cross-infection from baby to baby—important because the immune system is underdeveloped in preemies—and the addition of a bed for mom or dad and a chair helps promote a parent’s confidence in being the primary caregiver. At Mount Sinai, where there are already 62 single-family rooms, parents can stay as long as they want, even overnight, says Shah.
Social workers, along with other parents who have been through the roller coaster that is preterm birth, are now also an important part of NICU treatment. “Nobody anticipates a premature baby,” says Osiovich. “Everybody dreams of having the perfect baby. So there’s a lot of support we’re trying to provide, with social workers and other parents.”
Dalgarno remembers that a social worker came to her girls’ bedsides almost every day and “made sure everything was OK.” The visits gave her opportunities to talk about her fears and concerns, as well as to learn how to navigate the healthcare system. This is exactly what social workers are there for—to help parents adjust to an unexpected experience, says Faust.
“A significant piece of the work NICU social workers do is supporting families who are dealing with grief. Grief and loss aren’t always related to death and dying, but rather mourning the loss of the future they had imagined for their baby, the loss of a ‘typical’ birth experience, the loss of ‘normal’ ways of bonding with your baby.”
There are also the concerns about long-term outcomes, adds Faust. “Uncertainty is present throughout the NICU admission and lingers long after a baby’s discharge,” she explains. “Parents often leave the NICU with an uncertain prognosis, as it is only when the baby is expected to meet specific developmental milestones that their care needs become apparent.”
Going home is an important and exciting milestone for all preemies, and doctors celebrate along with their tiny patients’ families. “This is the best part of the job,” notes Thébaud. “When you see a baby go home and see the smiles on the parents’ faces.”
Once released from the hospital, preterm babies at the highest risk of disability will be enrolled in neonatal developmental follow-up. Depending on the infant and the centre, they may be part of a program for two years, sometimes longer, to assess their gross-motor, fine-motor, social development and language skills, and their learning ability at specific ages. If a child is lagging behind age expectations, resources are organized to provide support and therapy.
After 121 days watching over their daughters in the NICU, Dalgarno and her husband brought home Scarlett, then weighing six pounds, two ounces. Four days later, Payton, weighing five pounds, four ounces, joined them.
The twins have been home for five months now, and so far they’ve had few medical complications. Payton, diagnosed with chronic lung disease in the NICU, will likely be weaned off the oxygen she requires for her tachypneic breathing (fast but shallow breaths) sometime in January. And the Dalgarnos recently found out that the retinopathy of prematurity affecting the girls’ eyesight is no longer an issue at this point.
“Every battle we overcome makes us that much stronger,” says Dalgarno, who gets understandably emotional when she looks at photos from those scary early days. “I think, How did something so tiny survive?”
Extreme Relationship Stress
For many parents, the stresses and uncertainty of having an extremely premature baby can be very hard on their relationship. Daniela LaFace’s memories of her daughters’ time in the NICU—and the impact it had on her marriage—are still fresh.
LaFace’s eldest, Liliana, born in 2011 at 25 weeks gestation, had an intense ride. Within a few hours of her arrival, Liliana had her first of seven blood transfusions, as well as a severe brain bleed that would result in a diagnosis of mild cerebral palsy that affects her left arm and leg. Just 18 months later, the Stouffville, Ont., mom found herself at the same NICU with her second daughter, Samantha, born at 26 weeks but with fewer medical complications.
LaFace says having preemies was the hardest thing she and her husband have ever been through. “You feel like you are in the biggest thunderstorm, tornado, hurricane you’ve ever been in.”
Those months in the NICU can feel very isolating, even with a partner, she says. “When we were in the hospital, it was very rare that my husband and I were both there at the same time for an extended period—we just tagged each other in and out. He was running a business from a laptop in the hospital, and I was trying to learn how to cope with the loss of a full nine months of pregnancy,” she says. “It’s not possible for him to understand how I was sad to not ever feel my children kick or to be really treated like a big, fat, waddling pregnant lady. I was only six months [when I gave birth].”
Despite the joy of bringing their first-born home, the stress of the NICU experience took its toll on the couple. “Some days were wonderful; we were a happy family. And some days were horrible—I felt like a single mom, and he felt like a paycheque,” she explains. “It felt like we lost any kind of spark after three years and two premature babies. Married life felt like we were roommates.”
It eventually took a “very big fight,” says LaFace, to make the decision to work on their relationship for their family. The difference now, she says, is “we pause instead of fight, we ask instead of assume, and we discuss instead of staying silent.”
Learning from this experience, LaFace tells new parents of preemies to make time, as much as you can spare, to share your feelings with your spouse or partner. “You still need to celebrate that you had a baby and celebrate that one day the baby is coming home and you’ll be a family again. Remember to love each other and take care of each other.”
Having an extremely premature baby can be very isolating, but The Canadian Premature Babies Foundation’s Preemie Parent Support Network makes it easier for parents across Canada to connect and lean on each other for support and advice. This closed Facebook group is facilitated by parents trained in peer support, and it gives moms and dads of preemies a place to share their experiences and ask questions, trusting that the answers they get will be evidence-based, says Katharina Staub, executive director and founder of the foundation. “Families need a safe place to talk, where they know their babies are fine the way they are,” she says. For more information, visit cpbf-fbpc.org.