Elizabeth Scrimegour of Aylmer, Ont., is a busy toddler scooting around the house on her ride-on car. The active little girl scarcely resembles her first baby pictures. In those photos, she’s a wee bit of a thing — less than five pounds — in an incubator with heart and oxygen monitors, an IV line and a feeding tube.
Elizabeth was born prematurely, at just 34 weeks’ gestation. Her parents, Sabrina and Jeff, were in shock; their first two pregnancies had been full-term, and they didn’t know anyone with a premature baby. “I was freaking out,” Sabrina Scrimegour says of the morning her water broke early. “I didn’t know what to expect.” Fortunately, Elizabeth was strong enough to come home after 15 days in hospital. But the Scrimegours, like many parents of premature babies, endured an emotional ride they’ll never forget.
Over seven percent of babies in Canada — more than 25,000 a year — are born prematurely, having spent less than 37 weeks in the womb. Early labour can be brought on by known risk factors, such as smoking, a multiple pregnancy or a medical condition in the mother like high blood pressure. But many parents will never know why their baby came too soon. “That’s really frustrating for these families,” says Karla Schwarzer, a social worker in McMaster Children’s Hospital’s neonatal intensive care unit (NICU) in Hamilton. “Unfortunately, there’s a lot of guilt: ‘What did I do wrong?’”
A sudden early birth is emotional for parents, says registered nurse Kathryn Hayward, an assistant professor at Dalhousie University’s School of Nursing in Halifax and certified lactation consultant. “When you’ve delivered a baby prematurely, you’re lucky if you’ve seen the baby. It could be a very quick glance. You’re left on the delivery table and the baby’s gone. This beautiful experience you’ve planned, having your baby in your arms after birth, is gone.”
Happily, advances in medicine mean these babies face excellent odds, and the majority of preterm infants, like Elizabeth Scrimegour, eventually go home healthy. It’s a roller coaster no one would choose to ride. But knowing what to expect, and how to cope, can help you get through it.
When labour starts early
Meredith Hutton of North Vancouver experienced contractions just 30 weeks into her second pregnancy. “I was completely unprepared,” she says. At the hospital, she was given medications to stall labour and speed up her baby’s lung development.
The greater a baby’s gestational age (number of weeks in utero) and the higher her weight, the fewer problems she’s likely to encounter after birth. That’s why trying to postpone the birth is a typical intervention if mom is less than 34 weeks pregnant, says Donald Davis, an obstetrician in Medicine Hat, Alta., and past president of the Society of Obstetricians and Gynaecologists of Canada. “Every day is important,” he says. “If we can delay delivery for a few days, then that enhances the baby’s chance of a better outcome.” A delay of only 48 hours will give the lung medication (corticosteroids) a chance to work before the baby is born.
In some cases, the mother is given IV antibiotics to protect the baby from infection. If she is less than 33 weeks pregnant and a premature birth seems unstoppable, she can expect to be transported to a hospital with a NICU, where there are specialists and equipment to provide her fast-approaching preemie with a high level of care.
Fortunately, Hutton’s contractions stopped and she went home on bedrest. But at almost 33 weeks, she had a placental abruption — the placenta came away from her uterine wall. Less than three hours later, her daughter, Kiersten, was born by emergency C-section. “I was bawling my eyes out on the operating table, saying, ‘We don’t even have a car seat,’” remembers Hutton. It didn’t occur to her that it would be weeks before Kiersten could come home.
Your newborn preemie
When Toronto’s Kim MacDonald Smith saw her 31-week newborn for the first time, she felt utterly helpless. “His head was very bruised, and he looked so tired and in pain,” she recalls.
MacDonald Smith says she was grateful for the technology that saved her son. Even so, “it was extremely difficult to see Callum with all of the tubes and wires attached to him. The babies are so tiny, and you think they shouldn’t have to go through this.”
All the tests, equipment and IVs can seem invasive and scary. But they’re needed because a premature baby isn’t physically ready to breathe, eat and cope with bacteria. “With maturation, they will improve,” notes Jonathan Hellman, a neonatologist and clinical director of the NICU at Toronto’s Hospital for Sick Children. “But because of being born early, they are at risk.”
Still, interventions can be hard on a tiny baby. “It’s always a fine balancing act,” says Hayward. Many procedures, such as central lines, ventilators and even IVs, can cause damage or increase the risk of infection. But they may be necessary for baby to survive.
Because the lungs are so immature, breathing is a common issue. The lungs don’t always open up reliably, and baby may have episodes of apnea during which he stops breathing. A drug called surfactant may be given to help the lungs open. A premature baby may also be helped to breathe with a ventilator, a continuous positive airway pressure (CPAP) machine or supplemental oxygen.
“It’s heartbreaking. As much as you love them instantly, you have almost a guarded bond,” says Hutton. “Especially when you’re holding her and the alarms are going off, and you don’t know what’s going on, and she’s being taken from your arms to get her breathing again.”
A preterm infant may not have the energy to breastfeed, or may not be able to coordinate sucking and swallowing. So she may need IV nourishment at first and, when she’s ready, she can start to be tube-fed with mom’s pumped breastmilk. Feeds are usually introduced gradually: Too much too soon might be more than the baby’s digestive system can handle.
Since their immune systems aren’t well developed, babies born early are vulnerable to infection. Germs that won’t cause grief to older children can be life-threatening for premature infants. One of the functions of your baby’s incubator is to protect him from infection. Parents can reduce the risk further by removing jewellery, keeping fingernails cut short, and washing hands before visiting baby. They may also be asked to wear a gown when holding their baby.
Every preterm baby is different and some may require other treatment, for example, phototherapy for jaundice or a cranial ultrasound if there is concern about neurological injury. But most will be ready to head home around their due dates. A preemie is considered good to go if he’s been breathing on his own without episodes of apnea for a week or so, and feeding well on breast or bottle.
“I wouldn’t do this job if there weren’t good stories at the end,” says Schwarzer. “Parents have their ups and downs, but their ability to cope is amazing.”
Bonding with your baby
The parenting experience is different right from the start when you have a premature baby. “We didn’t get that opportunity to bond at the beginning,” recalls MacDonald Smith. “We weren’t able to hold him.”
There are other factors adding to the sense of distance. Instead of bringing your child home, you visit him. And the truth is that scrawny infant in the incubator may not look anything like the pink-cheeked newborn you were expecting. “Lots of moms will tell me they don’t really feel that it’s their baby, initially,” Schwarzer says. “There’s a kind of grieving going on over the loss of the Gerber baby.”
But even though it can feel like there’s a wall of medical equipment between you and your baby, there are ways to let him know that you’re there for him.
MacDonald Smith didn’t touch her son until he was three days old. But she talked to him constantly. “I didn’t know any baby songs, but I made stuff up to the tune of ‘Happy Birthday,’” she says. “I gave him a brief bio of all his relatives.” This is a wonderful way to let baby know you’re with him, says Hayward. “They know mommy’s voice when they’re born.”
When baby is stable enough for touching, gentle hand-holding or a hand on her chest can be comforting. And it helps to counterbalance all that medical handling. “The parent touch is a soothing touch, and the babies are getting an overabundance of negative touch,” Hayward points out.
Kangaroo care, or skin-to-skin holding (see Gimme some skin), is great for baby and his folks. Parents can also get involved with baby’s care, changing diapers, washing his face or swabbing his mouth. The more you do for your baby, the faster you become an expert on his needs. “It took some time to get the courage,” says MacDonald Smith. “You’re so worried you’re going to break them or dislodge something.” If any of it seems daunting, ask questions. The staff are there to help.
At the end of the day, though, it’s heartbreaking to leave your child in the hospital. MacDonald Smith cried every night for almost seven weeks before Callum finally came home. And that’s something family and friends who haven’t gone through this experience may not understand. “People are well-meaning, but they say things that are kind of dumb, like ‘Isn’t it nice that you have a holiday before your baby comes home?’” says Schwarzer. “What kind of holiday is it when you worry every day?”
Bringing baby home
Parents of premature babies will tell you that they don’t stop fretting when it’s time to go home. “I was scared,” says MacDonald Smith. “I thought, What if something happens?” But no baby is discharged if it’s considered risky.
One source of stress can be the number of well-wishers who want to see the baby. She’s still vulnerable to infection, so “handing the baby from person to person is not in her best interests,” says Hayward. “Parents need to know that it’s OK to say no.”
After everything they’ve been through, mom, dad and baby now need time for themselves, Hayward says. “Try to relax and enjoy your baby.”
Gimme some skin
Wanting to cuddle your baby is instinctive. And research shows that skin-to-skin contact between a parent and a premature infant is good for both. Also known as kangaroo care, this practice lowers baby’s stress levels and regulates his temperature, heart rate and breathing.
Kangaroo care is simple: The parent removes or opens her shirt, and the baby wears nothing more than a hat, a diaper and a smile. Well, she’d smile if she could. New research is suggesting kangaroo care even reduces pain reactions. Parent and baby may sit together for a few minutes to several hours.
This kind of holding is healing for parents as well. “That closeness was amazing. I looked forward to it,” says Kim MacDonald Smith of Toronto.
Halifax nurse Kathryn Hayward says skin-to-skin cuddling is becoming standard practice in NICUs. “It’s just powerful, that kangaroo care,” she says. “I’ve had moms say, ‘I finally feel like he’s mine.’”
A new test for premature birth
For women experiencing possible symptoms of preterm labour, such as contractions or a softening cervix, a new test may provide answers. It’s a quick vaginal swab that can check for the presence of the fFN protein. A lab can have results ready in half an hour. A positive test indicates a preterm delivery is possible.
The test is a particular boon for women in rural and remote areas, where they may have to be transported long distances for the specialized care needed in a preterm delivery.
Breastfeeding a preemie
Breastmilk is especially valuable for preterm babies. It contains microphages to destroy bacteria and antibodies to fight infection; it’s digested easily and offers protection from apnea and sudden infant death syndrome.
A preemie may not be able to latch and suck at first, so their moms usually do a lot of pumping. The expressed milk is fed through a small tube to the baby’s stomach. But even while this is going on, the breastfeeding lessons can begin.
As baby gets older, she’s ready to head to the source. She still tires easily, though, and her sucking reflex may not be as strong as a full-term baby’s. A nipple shield can help. If the baby pauses while nursing, the shield lets the milk pool and keeps mom’s nipple in the best position so it’s all ready for start-up again.
It may take many practice sessions before you’re a seamless breastfeeding team. “The hospital was really supportive,” says mom Sabrina Scrimegour of Aylmer, Ont. “They kept saying try, try, try.” When her premature daughter, Elizabeth, came home, she was taking more bottles than breast, but with the help of a public health nurse and her doctor, Scrimegour kept offering the breast. Ah, the sweet taste of success. “By the time she was eight weeks old, she got the hang of it,” recalls Scrimegour. “She refused bottles after that!”