Seventy-two days. Most newborns spend less than 72 hours in the hospital, but 72 days passed between the afternoon I gave birth to my daughter, Charlotte, and the evening she came home from the hospital.
Born at just 28 weeks and weighing in at two pounds, seven ounces (1,140 grams), Charlotte’s very unexpected arrival caught everyone off guard.
My husband and I had started the morning of June 27, 2004 with our usual Sunday tradition — watching back-to-back episodes of Coronation Street on CBC. Throughout the morning I had complained about a nagging lower backache. By 9:30 a.m. I was spotting and I knew something wasn’t right. After speaking to my doctor, we drove to a nearby hospital where I was told I was in preterm labour and already three centimetres dilated. (I wanted to kick myself for not reading ahead in my copy of What to Expect When You’re Expecting; if I had — despite the warnings of well-meaning mom-friends — I might have realized earlier what was going on.) To say we were shocked by the turn of events is a gross understatement. We were still weeks away from our first childbirth class. Her nursery wasn’t ready. We didn’t have a birth plan. We weren’t at a hospital with the grade of Neonatal Intensive Care Unit (NICU) that Charlotte would require. There was a chance we were going to lose our daughter.
We learned I had suffered a placental abruption — a separation of the placenta from the uterus, which was threatening Charlotte’s oxygen supply. I would later discover it is a leading cause of death for unborn and newborn babies. Four hours after we arrived at the hospital, Charlotte was born. There was no chance to hold her as a nurse immediately began to use a hand pump to force oxygen into her tiny, immature lungs. A neonatal transport team was called in to stabilize Charlotte and two hours later my husband and I placed our hands on her incubator and told our wee girl that we loved her before she was rushed by ambulance to the only Level III NICU bed available — at a hospital an hour away from our Toronto home. That night as I lay in my hospital bed, I gripped a Polaroid photo that a nurse had graciously taken of Charlotte and sobbed while I listened to the cries of other mothers’ babies.
In the tear- and prayer-filled days and weeks that followed, our families watched our “mighty Charlotte” suffer and survive a moderate intraventicular hemorrhage (bleeding in the brain), fight to breathe without additional oxygen and put on weight (a gain of 10 grams was cause for celebration, a loss was devastating). After almost a month in the NICU, Charlotte was transferred to a Level II NICU nursery at a hospital closer to us. Seven weeks later, weighing four pounds, 14 ounces, she came home — a week shy of her original due date.
Charlotte’s journey as a preemie didn’t end at our front door. Most premature infants face months and even years of care designed to help them thrive at home. If you’ve recently welcomed a preemie or know someone who has, here are some of the issues that surround bringing home these very little bundles of joy.
The average newborn will have a few well-baby visits with the
doctor in his or her first year, but preemies will be examined by a whole spectrum of medical professionals. I often joked that Charlotte had a busier social schedule than I did.
In addition to routine well-baby check-ups, some preemies will be enrolled in a neonatal follow-up program. Due to their prematurity, babies of less than 28 weeks gestation are at a higher risk for long-term disabilities such as cerebral palsy (abnormal muscle tone), visual and hearing difficulties and ongoing respiratory problems compared to infants born at full term. And while some congenital anomalies are diagnosed in the NICU, neurological problems and developmental lags will not become apparent for a few months or more. Learning difficulties and behavioural problems are diagnosed only at preschool or school age. That’s why follow-up is important.
“People have the impression when they come to the follow-up clinic that we are going to tell them something is wrong,” says Dr. Saroj Saigal, professor of pediatrics at McMaster University and director of the Growth and Development Clinic at McMaster Children’s Hospital in Hamilton, Ont. “Our role is to reassure parents when development is progressing well,” she says, “and to help families when there are concerns about some delays or problems and refer them to appropriate agencies to monitor the progress in between follow-up visits.” And most children do well, says Saigal encouragingly. “At 26 weeks gestation, 25 to 30 per cent of babies will have some problems (neurological, developmental, behavioural), but if you look at it the other way, 70 per cent are doing well.”
Generally, babies born before 32 weeks will be scheduled for follow-up visits throughout their first two years, depending on regional guidelines. Those born prior to 26 weeks may be followed until school age. Preemies with ongoing health concerns may have to see specialists as necessary.
The greatest fear for all preemie parents is having their baby readmitted to the hospital. One of the most common causes for preemie rehospitalization is Respiratory Syncytial Virus. It’s a common virus that causes few problems in healthy adults and children, but in premature babies born with immature lungs, RSV can inflame sensitive bronchial tubes, leading to breathing problems that can be life-threatening, says Dr. Denis Leduc, a pediatrician in Montreal. RSV’s symptoms are similar to those of the common cold; cough, runny nose, low-grade fever and general discomfort. However, if a preemie starts showing additional symptoms — wheezing, persistent coughing or difficulty breathing or feeding — seek medical attention immediately.
Kristine DiCecco’s son Jonathan, born at 27 weeks, was readmitted to hospital after contracting RSV when he was nine months old. “One night he was really having a hard time breathing, taking very short breaths, and you could hear all this crackling in his chest,” recalls the Mississauga, Ont., mom of two. “I remember thinking, “please let us get to the hospital in time.” Jonathan, who was given steroids to bring down the swelling in his lungs, was quarantined with other babies with the same virus for a week. Since that scare, Jonathan’s respiratory system is weaker, says DiCecco. “Every cold he got after that turned into a chest infection.”
To help reduce the risk of contracting RSV, doctors generally prescribe smaller preemies (32 weeks gestation or less) palivizumab (Synagis), which provides the antibodies required to fend off this infection. The injections are given on a monthly basis for five months, starting at the beginning of the RSV season in the fall and continuing until the spring. These injections can be given the following year, for as long as the child is still considered to be at risk.
All new parents can be a little crazy about germs and I was no different, especially because of RSV. I took every precaution Charlotte’s doctor suggested, including avoiding busy shopping malls and staying clear of my friends’ lovely but snotty-nosed children for the first few months. I know I came off as overprotective, but I would have done anything to save Charlotte a return trip to the hospital. “I think families need to advocate for the health of their baby,” says Lena Lloyd, a maternal child health promotion nurse at Credit Valley Hospital in Mississauga, Ont. That doesn’t mean staying home all the time, Lloyd stresses, but being mindful of situations where the baby could be exposed to germs. “If you’re having people to your home, make sure you ask them that if they’re not well, not to visit that day and make sure that everyone who’s touching the baby — and this is true for preemies and term babies — wash their hands,” says Lloyd.
Until the age of two (or longer, for extremely premature babies), preemies will have a gap between their gestational age (when they were born) and their corrected age (their expected date of birth). For example, a baby born two months premature should be expected to reach the developmental milestones of a four-month-old when he is actually six months old. On more than one occasion I had to explain to curious moms at our local mommy-and-me group why Charlotte was still not sitting up on her own, while their babies — who were born the same month — were crawling.
Corrected age also affects when a preemie starts solids — which is dependent on the severity of prematurity and your baby’s ability to accept food. “Generally solids would be started closer to six-months corrected age, but may need to be modified according to the baby’s developmental delays,” explains Dr. Leduc.
One area where your child’s corrected age does not come into play is the timing of immunizations, says Dr. Leduc. Preemies are immunized according to their birth date, not due date.
One of the joys of having a baby is dressing her in sweet, little outfits. Because of the increasing numbers of preterm births, several companies have responded with preemie-sized clothes for the five-to-seven pound set. Investing in a few of these outfits will make sure your baby is comfortable and not swimming in his sleeper. I loved seeing Charlotte in clothes that fit her just right. Don’t go overboard though; you’ll find that your tiny tot will grow out of these outfits within a couple of months.
Guilt? I have it in spades. While my doctor assured me my placental abruption was a fluke, I couldn’t help wondering what I could have done differently. Why couldn’t I carry her to term? I didn’t engage in any of the risk factors (smoking, drug or alcohol use), but I had been pushing myself to get an issue of the magazine where I was working at the time, out on deadline just days before Charlotte’s birth. Was it the stress I’d been under? I’ll never know, but I will always wonder. This feeling is common among preemie moms, says Dr. Mara Tesler Stein, a Chicago-based clinical psychologist, mom of preemie twins and co-author of Parenting Your Premature Baby and Child: The Emotional Journey (Fulcrum Publishing). “People get caught in that loop of what might have been, what I could have done differently,” she says. Guilt is a normal feeling, Stein explains, but one that can subside as you come to terms with the realities of what you can and can’t control. “The process is one of working through grief, because there’s a lot that we lose and our babies lose,” says Stein. “But it doesn’t have to be catastrophic and it doesn’t mean that they won’t go on with us to have wonderful, fulfilling, terrific life experiences.”
As for Charlotte, she is now an energetic three-year-old who would spend every minute of her day at the playground if she could. While she’s in a lower percentile for weight, she’s actually taller than a few of the kids in her preschool class. Her developmental progress appears to be on track and her only health concern is a “reactive airway” (a common ailment among preemies) for which she needs an inhaler.
While I was searching for photos to go along with this story, Charlotte, who adores looking at pictures of herself, jumped into my lap and flipped through the album with me. “Look, mommy,” she said, pointing to one of her in her incubator. “I was little, but I’m big now.” She sure is.