Caring hands - a unique support network for the most vunerable babies and their families
Having a baby inside a neonatal intensive care unit is a nerve-racking, life-altering experience. At Sunnybrook, parents who have been through it try to give back to those in need
When Irma Jules had her son at 24 weeks, she thought she was ready for what was ahead.
But when Nathan suffered a brain bleed just a day later, shock, fear and disbelief set in. Doctors told her he would need to have a shunt put in his brain.
She googled "shunt," and was overwhelmed by information that amped her fear about the procedure and the possible outcomes. A mom to three other boys, Irma was used to fixing hurts when her children had them. With Nathan, she felt helpless.
"I went home and I cried for the whole day and then I came back to the hospital with a new mentality," she says. "I will do what it takes to help get my son where he needs to be. If he can't see, I'll see for him. If he can't talk, I'll talk for him. I spoke to the doctors; they told me he wouldn't be able to smile at me. It was frightening."
| Peer counsellors Ophelia Kwakye (left) and Irma Jules (right) Photograph by Doug Nicholson
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Irma said what helped her most during that time was talking to other women in the Neonatal Intensive Care Unit (NICU). "I talked to every single mom I saw," she recalls. "In the hall, in the pump room, anywhere I could meet a mom. It used to make me feel better."
Now Irma – along with fellow NICU graduate mom Ophelia Kwakye – is a peer counsellor in the NICU. Their role is mainly to encourage other women to pump breast milk for their babies in the NICU. But the support goes beyond that.
"Some may not have it in their personality to approach other moms," Irma says. "We share our stories and facilitate discussion amongst them."
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I was always sitting there crying. And Kate would come to me and say, ‘can I give you a hug?’”
Irma and Ophelia host a weekly lunch, where women gather to talk about their babies, their experiences and their fears. If anyone isn't coping well, the pair connects them with other hospital supports.
Ophelia was just 22 weeks pregnant when she was admitted to Sunnybrook. Her son Emmanuel was born at 24 weeks and three days. He weighed just one pound.
"I didn't want to come downstairs to see him because I was so, so scared. I went the next day to see him, and I went crazy when I went in the room. I saw this big machine with all this big stuff around that I know nothing about, and the baby was inside, so very tiny. My life just changed. I just took it from there."
Ophelia says one of the people she remembers most from that time was Kate Robson, NICU parent co-ordinator.
"I was always sitting there crying. And Kate would come to me and say, 'Can I give you a hug?' She would tell me about her two preemie daughters. And so when she called me about being a peer counsellor, I remembered her telling me those stories, and that's what helped me most of the time. She had a 25-weeker, too. That kind of gave me hope that my son might survive."
Ophelia says the opportunity to pump her breast milk for her baby also gave her hope and purpose. "They told me the breast milk will help fight all the bacteria. So I was just pumping and pumping and pumping."
In her role as peer counsellor, Ophelia now encourages other moms to do the same. She tells them stories about
Emmanuel – now a selfie-taking, dance-loving four-year-old.
Irma's Nathan is now two years old. He started to walk. And talk. And smile. He had the shunt put in, and Irma now talks to other parents about that experience.
"Talking to other moms helped me so much, so, I figure, if I get the opportunity to do that and help, then I will."
 Nathan Litynsky, a member of the Dad’s Night group, |
DADS' NIGHT IN THE NICU
Overwhelming. Scary. Joyful. Stressful. Helpless. A rollercoaster.
These words come up over and over again at Sunnybrook's NICU Dads' Night, a monthly event that welcomes men with babies inside the Neonatal Intensive Care Unit to share their stories and support each other.
Attendance waxes and wanes each month. On this particular Thursday, five dads gather around the kitchen table in the NICU Family Room. They talk about baby names, how many weeks along their wives or partners were when the baby came, how scary it was and how they just feel at a total loss for words sometimes. The men erupt in laughter when one dad says there are so many wires in his twins' room, it's like they were born into The Matrix. The dads go quiet and gently nod when one says he feels scared to touch his little girl.
"I was scared at first, too," one agrees.
They talk about how it is hard going back to work.
"It's really hard to know what to say to people," one dad says. "It's hard to be at work at all," his neighbour adds, to murmurs of agreement from the others.
Nathan Litynsky's baby girl Emery came at 24 weeks, he tells the group. It's been really hard on his wife, Jaclyn. But hard on him, too, he says.
"We came here on one of the coldest days of the winter. We watched the snow come. Then it melted. Now there are leaves on the trees and green grass. I've been here awhile, guys, and so I will give you some advice. Take it one day at a time. Trust your baby will do the best she can."
It's Nathan's first Dads' Night.
"It was nice to talk to other dads who get it," he says afterward. "I have found it hard to find supports who really understand."
The evenings are facilitated by Grad Dads Dave Merriman and Zahir Keshavjee. Like other Grad Dads, Dave and Zahir had babies in the NICU, and they now offer support to families who are new to the experience.
Dave has been involved in Dads' Night since the program's inception in January 2012. Robson wanted to do something for the fathers, to recognize how important they are in the NICU process – and because they often feel like the "forgotten man," Dave recalls.
"Fathers play such an important role during this time, but may feel on the outside looking in at times or may be overwhelmed by the sheer magnitude of the occasion," says Dave, dad to two preemies. "For one night, this gives them the opportunity to relax, hear from other fathers who are facing the same circumstances as they are and also express how they are feeling and coping with the moment. Sometimes it's simply to provide an audience to listen as they tell how they are feeling and reacting. Other times it's an excellent exchange of details and information."
Zahir and his wife, Rishma, had twins in the NICU in 2013. The little boy, Khalil, died five days later. "It was a tough, tough process. I tried to support my wife and her emotions," says Zahir.
"The NICU is understandably a very female-focused environment. But being a dad inside the NICU has its own stresses and challenges. Dads' Nights are a space where they can connect with each other and offer each other some support – because it's hard to know where to find that. Dave and I share our stories, so they know where we are coming from and that they aren't alone," he says.
Dave and Zahir see themselves as helpers for an evening, there to listen and support dads during what is a life-altering experience.
"Having had two preemies myself and going through what they are going through, there is almost an immediate bond or understanding that is reached," Dave says. "I tell the dads that they have now joined a very special fraternity of those who have preemies.
"These little miracles are very special, and I hope the Dads' Night program has made the fathers feel special in some small way," he says. "Our message is quite strong and clear that dads matter, too, and play a vitally important part in the birth and care of their new child."
This content was produced by The Globe and Mail's advertising department, in consultation with Sunnybrook. The Globe's editorial department was not involved in its creation.