By Jodi DeLong
Evangeline Neily-Hecktor is bustling around her grandparents’ home in Falmouth, NS. The active toddler has been singing to her stuffed animals, “reading” books, and hollering down the floor vent to her grampy working in the basement. She greets a visitor to the home by name and flashes a radiant smile when her mother, Lacey Neily, comes in the door a few moments later.
The bouncy, happy, and healthy child is in sharp contrast to how things were in the months and days leading up to her birth, and her early life. Evangeline was a twin (Baby A) when she and her brother Leo (Baby B) were born at not quite 31 weeks. Thanks to extraordinary care by medical professionals at the IWK’s Neonatal Intensive Care Unit (NICU), there’s been a lot of joy—but also many tears.
“A little weird”
Lacey Neily was living in Calgary when she became pregnant in summer 2016, and an initial ultrasound indicated she was carrying twins. The obstetrics specialist Lacey saw specialized in high-risk pregnancies (as multiple-child pregnancies are considered) and was concerned from an early stage about the babies’ development.
“She told me, ‘Baby B is a little weird—not sure what is going on, but something is,’” Lacey says. Even at three months, the doctor told her to prepare for the possibility of just one healthy baby. “I don’t know how you prepare for the unknown, and it was strange to hear from the doctors that they didn’t know what was going on,” she adds. “I thought medical science and technology was more black and white, but there were many questions and grey areas throughout my experience.”
With the diagnosis of a potentially difficult pregnancy and birth, Lacey made plans to come home to Nova Scotia to her family. “I knew it was going to be complicated and emotional and difficult,” she says. “I needed to be around the people who loved and supported me the most—my parents.”
She was ill through the entire pregnancy, and extremely stressed, unable to work and dealing with a tumultuous relationship with the father of her twins. Then came the ultrasound where parents normally learn the gender of their babies. “They could see that Baby B wasn’t growing at the same rate as Baby A (about a third of the rate) and they could not identify Baby B’s gender,” Lacey says. Ultimately, she learned that Baby B was a boy from amniocentesis just before birth.
Lacey returned to Nova Scotia in early February of 2017. One bright spot in all the uncertainties was that the transition of her medical files was flawless—medical specialists in both Alberta and Nova Scotia knew each other and shared information on her case, which gave the whole family some confidence during uncertain times. “There’s also a reciprocal health plan because there are so many Nova Scotians going back and forth between here and there—everything was covered.”
Out of time
At her first appointment in NS, Lacey’s doctor determined that her body was getting ready to deliver. There began a series of stays in the hospital, multiple tests and ultrasounds and consults, with a goal of Lacey carrying the babies to at least 32 weeks, but that wasn’t to be. At 30 weeks, Baby B’s heartrate was slowing, and Lacey had to make a decision. “Should we delivery Baby A weeks down the road and let Baby B die, or have them early?” she says. Fetal distress in Baby B made the decision and the twins were born by emergency Cesarean the evening of March 13. Evangeline Rose weighed 3.1 pounds. Leo Richard weighed 1.3 pounds.
Initially, Leo was doing relatively well, but there were concerns about Evangeline’s breathing. However, Leo was beset with many health problems—including a bowel resection at only a few days old—and couldn’t be held at all. The family was encouraged to touch him with a finger, gently, with no rubbing because he was so frail—he was never well enough to come out of his incubator. “He was on so many medications, and while Evangeline was getting better each day, Leo would seem okay in the morning, and then there would be setbacks,” Lacey says. “The care team kept me informed, but there was so much they didn’t know because he didn’t respond the way he was expected to.”
The babies’ health concerns were creating a lot of distress in the family. “There wasn’t much I could do for Leo, so I was focusing on Evangeline a great deal,” Lacey says. After two weeks, the babies’ father had to return to Alberta for work, and there was still some limited optimism that Leo might rally. Then he began to have one very bad day after another, and there were difficult decisions to be made.
Leo was being sustained by multiple machines, and receiving up to 10 different medications, including fentanyl. His underdeveloped organs simply weren’t up to living, and there wasn’t anything further that could be done. Lacey says. “We couldn’t touch him, he wasn’t getting better … but while we were waiting for our doctor to come in to discuss this further, Leo started to deteriorate on his own.” He died on April 4th, his tiny body unable to take any more. An autopsy didn’t give the family and medical team any answers as to why he had failed to thrive during pregnancy.
Despite the overwhelming loss, Lacey and her family have huge praise for everyone at the NICU, from doctors and nurses on her care team to the social workers who provided compassionate support throughout this difficult time. “Everyone had so much obvious care and concern and did their best—they were an amazing bunch,” she says.
Little Evangeline had her own issues—a hole in her heart and a heart murmur discovered after she was born—but the day her twin died, she was able to move to the stepdown unit of the ICU. She, and her mum, couldn’t go home until she could nurse on her own and weighed five pounds, which she did by the third week in April. Mother and daughter stayed in NS for another month, then returned to Alberta. They came back in January of 2018, so the hole in Eve’s heart could be repaired, and then changes in their personal situation led Lacey and Evangeline to move back home to Nova Scotia just before Christmas of 2018.
How to help parents in grief
Losing a child is one of the most difficult situations a person can encounter, and those around the bereaved want to help in any way they can. Pamella Belliveau is bereavement co-ordinator in pediatric palliative care services with the IWK Health Centre. When someone experiences the loss of a child, whether pre- or post-partum, the hospital’s bereavement team are there to offer professional assistance as families grapple with their grief.
“Families are then followed at home by a member of their care team, with regular check-ins at one, three, six and 12 months,” she says. “We have a variety of resources we can offer to parents and can assist them in finding a bereavement support group or other professional assistance as requested.”
Belliveau has tips for friends and family. “Be present to them,” she says, “and hear their story as many times as they need to tell it. Say the baby’s name—ask them questions, ask what you can do to help. Try to avoid platitudes and clichés, (such as ‘at least you have one’ or ‘you can always have another’) as they may come from a hopeful place, but not from a helpful place.”
Pragmatic help is always useful. Offer to run errands, cook meals, do chores in the house, help with older children. And if they don’t want to talk about their loss? “Then you don’t,” Belliveau says. “Parents need to do what they need to do to get through the grief of loss.” She adds that grief does need expressing, whether talking it through, going through the memory box made by the care team for the parents, writing or otherwise making art. But there is no timeline, and Pamella stresses that losing a twin is a unique experience.
Lacey Neily says she was and continues to be, so grateful for all the support she has received since the twins were born. “My parents were my rocks and they kept me strong enough to face each day of uncertainty and fear, and then loss and compartmentalization,” she says. “And the nurses and doctors were there for us—they worked hard to try and help my tiny, sick, not ready for this world baby boy—and they cried real tears when Leo passed.” She agrees with Pamella Belliveau’s words. “People who check in and see how we are doing—and not being afraid to mention Leo’s name is helpful, too.”
Will Lacey tell Eve about Leo? “I already do,” she says as we watch her daughter industriously building a tower of blocks. “She has pictures of their side by side ultrasounds and cards from family and friends in her room. I try to focus on the good but still need to accept and process the pain, so I keep working on that. But it seemed natural with me to share memories of Leo with Evangeline whenever they come to me and the timing is right for a conversation.”
Header credit: Lacey Neily
No caption
Intro credit: Jodi DeLong
Caption: Lacey Neily shares a fun moment with her two-year old daughter, Evangeline (Eve), riding a special toy built for her by a friend.