Foster families and children with NAS fight for answers in uncharted territory

BOSTON HERALD.com – The two babies Anna adopted at birth from a drug-addicted mother came into this world in the throes of withdrawals — helpless amid the kind of nightmare that makes it hard for even adults to get clean.

“He was clearly withdrawing. He would shake. He would have tremors. It was a tough entry into the world for him,” Anna said of her son, now 6, who has shown more severe symptoms than his 4-year-old half-sister. But she also suffers.

“It’s the same mother, using the same drugs,” Anna said. Her daughter, at birth, “looked like this very sickly doll. She just didn’t look normal.”

Today the young family grapples with the long-term effects — learning disabilities, behavioral issues such as hyperactivity, and problems with vision, muscle coordination and gross motor skills.

Anna, who asked that her last name not be used to protect her young children, is just one of thousands of Massachusetts parents and grandparents struggling with this cruel side effect of the state’s rampant drug crisis.

Approximately 21 babies out of every 1,000 have been exposed to illegal street drugs in the womb, according to 2017 figures from the state Department of Public Health. The Department of Children and Families has received over 5,000 reports of substance-exposed newborns since 2017, each case prompting a screening and potential investigation, with some joining the 11,000 children already in the state’s foster care system.

Their condition is not well understood, leaving parents and guardians wondering what the future holds. Massachusetts foster parents and adoptive families of children born drug-dependent are forced to carve out their own path, with research and resources lagging behind in the state’s deadly opioid crisis.

Now 6 years old, Anna’s son has fallen behind in school, as he struggles with speech, vision, attention and muscle coordination problems.

“Nobody knows what they have to do to help these children, because there’s nothing out there,” Anna said.

State law requires mandated reporters to submit written reports to DCF immediately if a child has been born drug-dependent. Children born with Neonatal Abstinence Syndrome (NAS) are automatically eligible for one year of early intervention services funded through DPH.

A DCF spokeswoman said in a statement: “While parents seek treatment for their addiction, many grandparents, relatives or foster parents may care for their children. DCF is committed to supporting these caregivers so children are able to grow and thrive in a safe and nurturing environment.”

But parents and advocates say there are often gaps in the resources available to them. Children age out of the state’s early intervention services when they turn 3 and are transferred over to local school systems. But Anna was told her son didn’t need any services in school until a year ago when she had him reassessed and placed in new programs.

“I didn’t know how big of an advocate that I had to be … Now I don’t let things go, I’m a pit bull,” Anna said. “Bells should be ringing for school systems and pediatricians and providers who work with these kids.”

Theresa Harmon, founder and executive director of To The Moon and Back, an advocacy organization aimed at supporting NAS children and caregivers, said the biggest gap in resources for children is between ages 3 and 5.

“There’s no best practices and care,” said Harmon. “People aren’t talking about the long-term needs of these kids and they really need to.”

The issue has drawn attention on Beacon Hill. An amendment to Gov. Charlie Baker’s opioid bill, which passed unanimously in the House, outlines a study of long-term NAS effects and additional medical services for families. But no money has been allocated for it yet.

In a survey conducted this year, 54 of To The Moon’s 60 families said they don’t feel they got enough support or training from DCF to care for their drug-dependent child. Harmon runs a support group in Plymouth where families gather to swap advice and share concerns.

“We still struggle every day. We’re in the middle of crisis right now,” one mother said.

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By Alexi Cohan