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

The Hamilton Spectator - - FRONT PAGE - MOLLY HAYES

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


Health au­thor­i­ties are see­ing a rise in ba­bies born with opi­oid ad­dic­tion. They can re­ceive around-the-clock treat­ment in the St. Joseph Neona­tal In­ten­sive Care Unit.

Dr. Liz Shaw, left, and nurse prac­ti­tioner Clau­dia St­ef­fler. Shaw is the found­ing doc­tor of the Pro­gram for Sub­stance Use in Preg­nancy.

Stu­dent nurse Sarah Van Allen in the St. Joseph Neona­tal In­ten­sive Care Unit, where ba­bies born with opi­oid ad­dic­tion re­ceive care.

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