Born in withdrawal
With the city and country in the grips of a deadly opioid crisis, The Spectator’s Molly Hayes takes a look at its littlest victims — the growing number of babies born addicted to opioids — and the programs that support them and their mothers
IN A DARKENED, QUIET ROOM off the third-floor neonatal intensive care unit at St. Joseph’s Hospital, Christie cradles her baby Sam. He is swaddled tightly in a white hospital blanket, with a matching white cap on his chubby bald head. Nurses shuffle back and forth outside the door as muffled cries echo through the hallway.
Christie is nervous. In just a few hours, she will meet Sam’s future foster mother — the woman who will take her baby home from the hospital in just a few days. Sam was born with Neonatal Abstinence Syndrome (NAS), meaning that he came into the world in opioid withdrawal.
For this first 31 days of his life so far, he has lived at the hospital, as his tiny body is slowly weaned off the morphine he is given to combat the shaking and shivering and fever and near constant crying that can come with NAS.
Baby Sam is one of an increasing number of babies in Canada born with an opioid addiction. In the St. Joe’s NICU on this day, there are five babies being treated for opioid withdrawal.
“When I started (20 years ago), we’d maybe have one every six months,” says registered nurse Ann Patton.
In Hamilton, there were roughly 45 NAS births in 2015. That number shot up to roughly 62 last year
NAS RATES ARE UP NATIONALLY, provincially, and even locally in Hamilton — a byproduct of a deadly opioid crisis that is killing thousands of people across the country each year.
For every 1,000 babies born across the province between April 2015 and March 2016, 5.9 were diagnosed with NAS. The national rate was 4.2 births per 1,000. Those figures are a stark increase from a decade earlier, when the provincial and national NAS birth rates were both 1.8 per 1,000.
In Hamilton, there were roughly 45 NAS births in 2015 — a number that shot up to roughly 62 last year.
For those struggling with addictions, pregnancy can be a difficult experience; one wrought with shame and fear and guilt. These women know drugs are bad for babies. But quitting is easier said than done — and in many cases, going cold turkey during a pregnancy can be much more dangerous. But doctors say that a pregnancy can also offer a unique and unprecedented change to engage.
In the face of this epidemic, The Spectator explored the local programs that support moms with addictions and babies with NAS. This three-part series shares stories of heartbreak and perseverance from those at the very heart of this fight.
CHRISTIE AND HER BOYFRIEND, Sam Sr., both 27, have long struggled with opioid addiction.
These are not their real names. Because their baby is going into foster care, legislation protects the family from being identified in any way.
For Christie, it was during her pregnancy — which she only discovered between the fifth and sixth months — that she felt ready to get help. She’s now on methadone and in a residential treatment program, which linked her up with the Maternity Centre before baby Sam arrived — a program she is grateful for.
The centre, which runs out of the David Braley Health Sciences Centre downtown, has a specific Program for Substance Use in Pregnancy (PROSPR).
“We had started to see (moms with these issues) at the Maternity Centre … and we really didn’t have a co-ordinated approach to their care,” Dr. Elizabeth Shaw, the program’s founding physician, remembers. Inspired by the work that was being done at Toronto’s TCUP (Toronto Centre for Substance Abuse in Pregnancy) program, Shaw knew there was a similar need here.
PROSPR provides “one-stop shopping” for expectant mothers with substance use issues, offering both neonatal (or antenatal) care and methadone out of one clinic. By combining medical and addiction treatment into a single appointment, Shaw and Dr. Jill Wiwcharuk say they increase the likelihood of their patients actually making them.
“As soon as you put those together, you’ve decreased the amount of appointments in their life by a ton,” says Wiwcharuk, who is also the executive director of the Shelter Health Network.
“Our women’s lives are so chaotic with so many competing priorities that they find it difficult to show up to all the appointments necessary for prenatal care. But they rarely miss an appointment for methadone. So it can really help get patients the prenatal care they need.”
In the three years since it has launched, roughly 60 women have gone through the PROSPR program. The three-person team — Shaw and Wiwcharuk, along with nurse practitioner Claudia Steffler — also works closely with the NAS clinic at St. Joseph’s, where that support is carried through delivery and into infancy.
Their program is not restricted to women using opioids. Some of their patients also struggle with alcohol use or other drugs such as cocaine.
SIGNS OF WITHDRAWAL in babies can occur within hours of birth, or can take days to appear.
For Christie and Sam, having been through withdrawal themselves made it harder to watch their little boy go through it.
“We both know what it’s like to go through withdrawal. It was hard to see a newborn going through that,” Dad says.
A scoring system called the Finnegan Score is used to monitor the baby’s symptoms — things like tremors, broken or red skin, excessive crying, sweating, sneezing, vomiting — and determine whether medication (like morphine) is needed. If it is, the baby’s hospital stay can be extended from five days to several weeks.
During that time, parents can stay in bunk rooms (“care by parent” rooms, they call them) outside the NICU, where they are nearby for feeding or holding duties. While babies in withdrawal do not necessarily need high-tech care, they require lots of hands-on care — literally near constant holding.
Moms who are on methadone can also breastfeed. It’s encouraged. Such little amounts of drugs pass through breast milk that the benefits generally outweigh any worries about continued drug use, the doctors say.
Though she was able to, Christie opted not to breastfeed baby Sam. Knowing he’d be going into foster care, she didn’t want to forge a bond that would be broken so quickly.
THE HARDEST PART for her, she says, was the uncertainty during her pregnancy — not knowing what to expect, or whether her baby would come out OK.
“I was worried,” Dad says, nodding. “I didn’t want him coming out with two heads.”
In reality, NAS is not a life sentence. With the right care, many babies born in opioid withdrawal
PROSPR provides “one-stop shopping” for expectant mothers with substance use issues, offering both neonatal (or antenatal) care and methadone out of one clinic
go on to have perfectly healthy childhoods and perfectly normal lives.
But it is this fear, and the stigma around drug use, that keeps so many expectant women with addictions from getting the prenatal care they need. A hospital can be an intimidating and scary place for these women. They feel judged by the staff, and even the other patients — and so, often times, they stay away.
“It’s always sad when somebody comes in and we’ve never met them before and they’ve had no care. It happens not infrequently,” says St. Joseph’s Healthcare pediatrician Dr. Sandi Seigel, another member of the support network.
“It is heart-wrenching,” Seigel acknowledges. “But the reality is it’s not going away.”
THE GOAL IS TO ENGAGE with these moms well before this point. Staff — who have been trained in non-judgmental care — meet with them ahead of time to lay out clear expectations. What will the baby go through? What will the mom likely feel? What will her role be? What role will CAS play?
“One of the very first things I always say in meetings with families is: ‘We’re here to celebrate with you the amazing work you’ve done thus far in your recovery,’” social worker Sarah Simpson says.
Sometimes that means getting onto a methadone program — and other times, it means just being willing to show up and ask for help.
“‘We’re here to get to know you a little bit before you come to spend potentially five days to six weeks with us.’”
As a result of this collaborative work between McMaster and St. Joseph’s, the team is seeing an increasing percentage of moms going into their delivery on a steady methadone regimen (versus on street drugs). This is the best-case scenario, doctors say. “If you’re on a stable methadone dose, then that’s the best scenario if you have an addiction. The best thing would be if you can fight your addiction before you get pregnant, but we don’t see a lot of it … and it’s true that a lot of these are unplanned pregnancies,” Seigel says.
Getting onto methadone is a major step in a mom’s recovery — one to be celebrated, not criticized, they say — and one that could mean the difference between her ability to parent her baby and that baby being apprehended.
“There is a perception that most women who are on methadone don’t get to parent their children — that they’re horrible people and bad par-
“One of the very first things I always say in meetings with families is: ‘We’re here to celebrate with you the amazing work you’ve done thus far in your recovery.’” SARAH SIMPSON SOCIAL WORKER (PICTURED ABOVE)
Opioid use can affect a woman’s menstrual cycle to the point that she may rarely have her period, and therefore may not realize she is pregnant
ents. But it’s quite the opposite,” Simpson says. “I think we need to always remember that it’s a methadone maintenance treatment program. It is a form of treatment.”
In fact, according to a 2014 audit by St. Joseph’s Hospital, Seigel says close to 60 per cent of their NAS babies went home with their mother upon discharge. Another 10 per cent went into “kinship care” (with a relative or friend), and roughly 30 per cent went into foster care.
“More than half do go home with their biological parent, even if CAS is involved,” Seigel says.
Most of these moms do want to parent, they say — whatever that arrangement looks like. It is rare that they have a patient who wants to put their baby up for adoption.
Abortion, of course, is the third option. But the reality is that many of these women, particularly those who come through the shelter health network and whose lives are more chaotic, are coming in for care too far along for abortion to be an option.
Wiwcharuk has people coming to her when they are already six months along — showing and sometimes even seeing movement.
“It’s possible many would choose abortion. But the reality is they are not finding out they’re pregnant at four weeks and three days,” she says.
Opioid use can affect a woman’s menstrual cycle to the point that she may rarely have her period, and therefore may not realize she is pregnant.
Dr. Suzanne Turner, a family physician at St. Michael’s Hospital in Toronto who has studied NAS, says that it is important to connect with women with addictions to discuss the possibility of pregnancy with them.
“We can do a better job of saying to them: ‘If you don’t want to get pregnant during this time, you should be on birth control — and if you do want to be (pregnant), there are some things we can offer you to make this pregnancy as safe as possible,’” Turner says.
In cases where a woman is unable to parent and there is an apprehension plan in place — whether that means the baby will go into foster care or will be adopted — it can be traumatic.
Wiwcharuk vividly recalls a sobbing pregnant woman in a shelter, telling her that she’d never know the feeling of carrying a baby she’d never get to keep.
Another woman they worked with relapsed — after nine months of stable methadone treatment — and overdosed and died last fall after the trauma of having her newborn apprehended.
Often these women have had a lifetime of trauma — another reason for the fear of authorities and institutions including hospitals. Maybe they grew up in care themselves, or have dealt with the justice system, they say.
“You hear some of their stories and they are horrific. You can understand why they got into an addiction,” Seigel says. “But having a baby is probably the biggest motivator for a lot of these women. They may not think they’re worth it, but their baby is worth it.”
FOR CHRISTIE AND SAM, it was indeed their baby that sparked the desire to finally get clean. Christie is now in a residential treatment facility. Sam has been on methadone for a full month, off street drugs since the day his son was born.
“I can celebrate my recovery anniversary every year on his birthday,” he says, grinning.
“Just actually getting here and seeing him born. It changed my whole life. I have a heart now, a conscience.”
“Thank God for CAS,” he says — a statement that many likely would not expect to hear from someone whose baby is about to go into foster care.
He acknowledges he didn’t feel that way at first. He says he cried through every appointment with their case worker. “I felt like they were here trying to take my kid away.”
But every single day, the two of them have come to St. Joe’s’ third-floor NICU to be with their baby. They know that when he goes home, it will not be with them. And while that was an excruciating reality to accept, they acknowledge that foster care is, for now, for the best.
“If you’re on his team, then I’m on your team,” Sam says. “But I can’t wait to bring him home.”
He wants to get clean so that one day he can father this child. Christie too wants desperately to be a mom.
But they have their own recovery journeys to get through first. CAS will work with them — but they’ll also be watching closely.
For today, Christie is ready to meet the foster mom, but she is not ready to see her interact with her baby. She doesn’t want to be there for that. Sarah Simpson, her social worker, encourages her that they’ll work on that. She wants Christie to feel like she taught the foster mother how to care for her baby, because she knows him best.
“You can think of her as a babysitter if you like,” Simpson tells her.
Christie nods, still staring down at Sam, now quiet and sleeping in her lap. “Thanks for that,” she says quietly. These meetings between parents and foster parents can be difficult in the moment, but Simpson praises this grassroots “wraparound” approach to social work.
“Many of the parents have grown up in the foster care system themselves, and they are scared of their child going to a stranger,” Simpson says.
“But going back to having so many of the foster parents into our unit and working collaboratively with the parents is great. It really helps … knowing that their child is going to be safe.”
IT CAN BE DEPRESSING WORK, Simpson admits. But it can also be inspiring.
“The heartbreak is, you know there’s not one woman or parent who comes in here who doesn’t truly love their child and who doesn’t truly want to do the right thing and want to parent,” she says.
“The nicest thing is if you see somebody, maybe they didn’t get to take their baby home — but they did get their baby back. And that’s not going to happen without support. If you judge and don’t support them, it’s just going to be bad for everybody.”
“There is a perception that most women who are on methadone don’t get to parent their children, that they’re horrible people and bad parents. But it’s quite the opposite.” DR. SANDI SEIGEL ST. JOSEPH’S HEALTHCARE PEDIATRICIAN A hospital can be an intimidating and scary place for these women. They feel judged by staff and other patients. So, oftentimes, they stay away