New York – My wife Ivandy wasn’t due to deliver our son for another three months when her water broke. We rushed to the hospital where doctors said our baby’s world was drying up around him.
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Nicholas was born weighing just two pounds, two ounces. His face was the size of an old-fashioned silver dollar and his life seemed to hang from a passel of tubes and wires connected to beeping and sputtering machines.
In the days ahead, I learned to read monitors and hang on nervously as Nicholas’ oxygen levels dipped and rose along with my heart. The neonatal intensive care unit (NICU) became our second home. As parents of preemies, we were plunged into a community of experts and caregivers that we hardly knew existed before. And we had to learn to cope not just with our son’s needs, but also with our sorrow, emotions and anxieties.
Before Nicholas’ birth, I’d seen pictures of tiny intubated children in incubators and assumed their mothers had health problems or issues like drug abuse. But I learned that about half the women who have pre-term babies don’t fall into any known risk category, as was the case with my wife, Ivandy.
About 12.9 million premature babies are born around the world each year. As medical advances allow more children to stay alive, that number is growing. In the United States, the number of pre-term infants has increased by 36 per cent over the last 25 years. Only recently have doctors started looking beyond survival and focused on improving outcomes for premature children outside the NICU.
Children born prematurely may have learning disabilities, attention deficits, cerebral palsy, vision and hearing problems, respiratory illnesses and other conditions. Doctors are also finding that the trauma of premature birth can be devastating to parents, who may suffer from depression and anxiety disorders, including post-traumatic stress disorder — the same condition that can afflict troops returning from war.
“Prematurity is not just a medical crisis, it’s a family crisis. There are confusing, conflicting emotions,” explains Mara Tesler Stein, a clinical psychologist and co-author of “Parenting Your Premature Baby and Child.”
Stein compares parents’ experience of grieving after the birth of a premature child to that of losing a loved one — an especially confusing emotion when you are in fact gaining a loved one.
Our first family portrait shows my wife in a hospital bed and me leaning over, smiling and holding a Polaroid of Nicholas alone inside a plastic box, swallowed by his diaper, sensors trailing from his tiny fingers and feet, an oxygen tube taped to his nose.
My wife and I didn’t know whether to be happy or sad. Should we send out birth announcements? What if the baby doesn’t make it? When I spoke to my father prior to Nicholas’ birth, he was already offering condolences.
We attended one last baby preparedness class after Nicholas was born but it felt awkward explaining to the expecting parents our baby was already born but not yet home. It also felt like time which would have been better spent in the hospital with Nicholas.
Most parents agree the hardest part of having a premature child is leaving the baby alone in the NICU.
“I felt like I was abandoning them,” explains Melissa Orlando, a Colorado art teacher who gave birth to premature twins. “Goodness, they didn’t know if I was going to come back. I did a lot of talking with them, explaining I was going home to sleep.”
The next hardest thing is the uncertainty: No one could give us a definitive prognosis for our baby because every premature child is different.
Orlando’s twins quickly become over-stimulated, hiccuping and turning white if they were handled too much — a common condition among preemies.
Nicholas, by contrast, never suffered from this, nor did he need a respirator, feeding tube, or require brain surgery as did several of the other children who shared the same NICU. Nicholas’ issues would only become apparent later.
When Nicholas left the NICU, I wasn’t suffering so much from post-traumatic stress syndrome as an excess of pride that our child had appeared to have done so well.
I had almost forgotten the morning when I arrived at the NICU to find a report taped to his incubator stating that he had stopped breathing during the night. A doctor said we’d have to wait and see if there was any neurological damage.
Dr. Brian Carter, director of the Neonatal Follow-up Program at the Monroe Carell, Jr. Children’s Hospital at Vanderbilt University in Nashville, says predicting outcomes for premature children is difficult because treatments are constantly evolving and often doctors only learn 10 years down the road “what were the rewards of our interventions and the disabilities.”
“Many clinicians may be reluctant to glibly inform or saturate or over-saturate a parent’s mind and agenda with all sorts of potential concerns that sound overwhelming and potentially very negative and frightful,” Carter explains.
In retrospect, we were lucky to have doctors who remained unfailingly optimistic — even if they weren’t always entirely honest about all the obstacles that might lie ahead.
Over the past decade, doctors have made many advances in techniques to improve the quality of care in the NICU to lessen trauma and improve outcomes — including skin-to-skin contact, also called “kangaroo care”; encouraging breast milk over formula; and involving parents more in baby care.
Almost from the outset, Ivandy was able to keep Nicholas tucked between her breasts for most of the day. When I watched him with Ivandy or held him in my arms, I felt OK. But when I was away, worries crept in. Would he walk? Talk? Go to school like other kids? The fears would snowball until I would sometimes cry and even scream.
I spent almost all my spare time at the NICU, coming in after work and warbling to Nicholas off-key for a few hours each evening. The nurses often let me stay long after visiting hours had ended, but it was hard to wake up for work the next day.
“I think fathers can have a harder time attaching to their child, especially if the child’s really sick,” explains Dianne Maroney, co-author of “Your Premature Baby and Child” and a NICU nurse. “Men tend to be fixers and if they can’t fix the situation they really don’t quite know what to do with it.”
Maroney, whose daughter was born prematurely, says parents should seek outside help and not rely exclusively on doctors to help overcome the obstacles facing their children.
“You have to learn to follow your gut instinct — my daughter is almost 17 and according to statistics she should be a very different child than she is and she’s really, really quite normal, and I believe that’s because I was willing to step outside the box and try other things,” Maroney says.
When it came time to take Nicholas home, the doctor told us to treat him like any other child. We later discovered he had suffered a brain injury during the incident when he’d stopped breathing. It had affected his motor co-ordination, requiring him to use a walker.
It turns out such surprises are not uncommon for parents of preemies.
And yet it’s not as bad as it seems. If I had a magic wand and could make everything all better I wouldn’t hesitate for second, but at the same time I wouldn’t want to lose the stronger person I’ve become — a warrior, self-educated physical therapist and passionate advocate for allowing Nicholas to lead as normal a life as possible.
Then there’s also the incomparable joy that has come from knowing and loving Nicholas.