Mother speaks out against drinking during pregnancy
ST. PAUL — Sometimes bystanders are curious when they see Tiffany Morgan's 8-year-old daughter have a meltdown at the playground. The conversation goes like this:
"Why is she doing that?" asks the stranger.
"She has FASD," Morgan explains.
"It's fetal alcohol syndrome."
"What is that?"
"I drank while I was pregnant with her."
Morgan has become accustomed to sharing her most private pain — if it helps someone understand her daughter Ny'Ana's disability or raises awareness about the risks of drinking while pregnant. The 41-year-old St. Paul woman has become a spokeswoman for fetal alcohol spectrum disorders, the term given to the cognitive and physical damage that can result when a woman exposes her fetus to alcohol. The effects, which range from mild to severe, are a major cause of developmental disabilities and increasingly seen as a large public health problem, yet one the American Academy of Pediatrics calls "vastly under recognized."
It's also 100 percent preventable, but it's not something most people feel comfortable talking about, said Ruth Richardson, program director at the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS). And that's making it hard to deal with the problem.
"Until we shed the shame and the stigma about this issue, there are going to be secrets," Richardson said. "And that's going to make it hard to understand its scope."
'No one sets out to hurt their baby'
Obstetricians are not always sure how to talk to women about drinking, and pediatricians might never ask about it, she said. Schools might be unaware of children who have disabilities caused by alcohol.
And few people understand the complex reasons women drink while they are pregnant. They might drink before they know they have conceived. They might have addictions or be ignorant of how alcohol could affect a fetus.
"No one sets out to hurt their baby," Richardson said.
MOFAS, which was formed in 1998 to support foster and adoptive parents of children with fetal alcohol spectrum disorders, recently started helping mothers like Morgan share their stories to raise public awareness.
"Tiffany really connects with the women," said Catie Triviski, who coordinates the organization's chemical health programs. "It's so hard to process that you could have caused harm to your child. There's so much shame that it can prevent women from even talking about it. And I know there are other women who contact her for support. She helps them know they aren't alone."
Morgan grew up in Evansville, Ind., the second of five children in a tight-knit black community where, as she put it, "if you got past your parents, you didn't get past your neighbors." Her mother is a retired school teacher. Her father, who passed away in 2009, was a mechanic. He also drank heavily. Morgan didn't know about that until she was 16 and was called to a hospital emergency room after her dad almost died of complications from alcohol withdrawal.
She kept to herself as a child, reading Nancy Drew mysteries and "Little House on the Prairie." After high school, she tried to enroll in the Army and was told she was pregnant during the routine health exam. She said prenatal visits with her doctor didn't touch on avoiding alcohol.
"I don't remember them asking, do you drink, or when do you drink, or how much do you drink?" she said. "I just remember hearing 'your baby is protected because it's in that sack of fluid.' "
Morgan said her doctor told her to drink a couple of glasses of red wine to boost her iron. She wasn't a drinker then. So, instead, her grandmother cooked up iron-rich collard greens.
Morgan's first daughter, Ny'Asha, was born 1994. Just before the birth, the baby's father, a young man whom she recalls more as a childhood "best friend" than a boyfriend, was shot and killed in the parking lot of the local liquor store, being "in the wrong place at the wrong time," she said.
'Something in my head just snapped'
Morgan started smoking marijuana to escape her grief and stress. During the next decade, she held a series of low-wage jobs. She worked several years in a nursing home but quit because "I was getting too attached," she said. "It really messed me up mentally when they would pass." She worked as a construction laborer, washed and cut hair and operated a switchboard until "something in my head just snapped" and she was diagnosed with bi-polar depression. In 2006, she lost her job driving a day care bus.
"I was always working paycheck to paycheck," she said. "I was tired of being broke and not having what the drug dealers had — cars and trips and anything their kids wanted. I always had to pay bills and I wasn't able to get things for my daughter. So I started selling drugs."
Morgan said she made a lot of money selling crack cocaine before she was caught a year later. Her attorney entered a plea bargain, and she was released after serving two months in jail.
"I believe God knocked me down," said Morgan. "I would have probably become a monster if I stayed in it any longer. I didn't care about anybody. I just wanted your money. That's how I became."
Morgan knew marijuana would show up in drug tests required by the terms of her probation. So she switched to a legal drug — alcohol. On her first day out of jail, she went to the liquor store, bought a fifth of Grey Goose Vodka and sat on her front porch drinking until she passed out. She continued drinking, even after she discovered she was pregnant again.
Looking back, she said she didn't seek help because in her family, "therapy was for people in straight jackets. That's why I handled it the way I did. I just drank. And my family never said anything about it even though they knew I was pregnant. I didn't have no support. So I drank. It was a really messed up time."
Unknown to her, the alcohol passed through the placenta to her developing baby. Liquor's intoxicating ingredient, ethanol, triggers brain cells to "self destruct on a massive scale," according to University of Minnesota psychiatrist Jeffrey Wozniak, who treats and studies children with alcohol-caused disabilities.
"When we say that alcohol is more toxic than marijuana and cocaine and heroin, people don't believe it," says Wozniak. "Alcohol's toxicity has nothing to do with whether it's legal or illegal, it has to do with basic chemistry."
Something was wrong
Morgan's second daughter Ny'Ana was born full term in April 2008, at five pounds, seven ounces. Low birth weight can be a sign of alcohol exposure, but Morgan didn't suspect a problem. And despite the unwanted pregnancy, she fell in love at first sight.
"When I seen her, I loved her. That was my baby, and it didn't matter."
After her year and a half of probation was over, Morgan caught a bus to the Twin Cities in search of a new start.
Ny'Ana was a fussy baby who cried almost constantly, and Morgan strapped her to her chest in an effort to sooth her to sleep. She never crawled and didn't speak until she was 3. Something was wrong, but no one knew what. Morgan took her to early childhood education classes for toddlers with developmental delays. Finally, a pediatrician referred Ny'Ana to a psychologist for a more thorough evaluation, where for the first time someone asked Morgan if she drank while she was pregnant.
"The question shocked me. I was afraid to answer. So, I lied. I said 'No. I don't know what you're talking about.' "
It's not uncommon for women to lie, which makes it even more difficult to identify alcohol-caused disabilities in children. By now, Morgan had a third child by a third father, a boy named Malachi, and she was worried child protection would take her kids. A nurse practitioner at Hennepin County Medical Center won her trust.
"She didn't come with authority in her white coat," recalled Morgan. "She said, 'I'm going to talk to you woman to woman.' She said I wasn't in any trouble. She said they wanted to start Ny'Ana on this medication for ADHD. And that I needed to be honest because they could give her the wrong medication and it could harm her. You need to tell them so they can help her. So, I told her. I told her as much as I could remember."
A follow up with a specialist determined that Ny'Ana had subtle physical signs of alcohol exposure, including a slightly smaller head and a smoothing over of the philtrum, the natural indentation below the nose. She also had invisible and permanent brain damage, leading to a diagnosis of alcohol-related neurodevelopmental disorder (ARND) when she was 4½.
"It killed me. As soon as the doctor told me, my heart like dropped to my stomach," said Morgan. "I remember getting really, really hot. And I had to step out for a minute. When I got home, I sat down and I looked at her and went over what they had pointed out. I started seeing it. I got to thinking back to when she was younger and thinking, that's why she was acting that way. And the more I seen, the more it killed me. I couldn't even look her in the face no more. I wanted to die, but I knew I couldn't die because my kids needed me."
'Brain damage is invisible'
Morgan quit marijuana immediately after her daughter was diagnosed. She had quit drinking before Malachi was born. She's spent the nearly four years since then trying to be a good mother to her kids. After being homeless, she found a subsidized apartment in St. Paul's Payne-Phalen neighborhood. She is in therapy and receives Social Security disability payments because of her bi-polar depression. Malachi, who was not exposed to alcohol, is doing well. Her older daughter, Ny'Asha, often drops by.
Ny'Ana is in summer school. She doesn't read, but on a good day, she can recite the letters of the alphabet. She finished a second year of kindergarten at a school where Morgan said the teachers "don't know much about FASD but they are open to learning." At Ny'Ana's first school, Morgan felt the teachers pegged her as a "bad" girl who didn't follow directions.
"Part of the problem is that the brain damage is invisible," said Richardson, with the Minnesota Organization on Fetal Alcohol Syndrome. "When teacher sees a child with FASD, they can't tell they have special needs. No teacher would ever look at a kid with Down Syndrome and say, 'you just need to try harder.'"
Ny'Ana has trouble focusing and is impulsive. She interprets instructions literally.
"If I tell her in the morning to go put her clothes on, that's just what she'll do," said Morgan. "She'll put her clothes on over her pajamas. She's gonna do exactly what you say." She doesn't understand social nuances and gets upsets if other kids tease her.
Her memory is damaged, and she doesn't easily predict consequences. When Morgan recently baked cookies, Ny'Ana reached over a hot stove to get one and burned herself. "And then she did it again. And she did it again." said Morgan, who speaks with both fondness and exasperation about her daughter. "What I think of as common sense, they don't have it."
Through the Minnesota Organization on Fetal Alcohol Syndrome, Morgan has learned to be patient and to break down complicated tasks into small steps.
"I think it's getting a lot better," she added. "But it's brain damage and it's permanent."
'God put me in this position'
Morgan lives with a profound sense of guilt.
"I probably won't never be over it," she said.
It's partly what drives her to tell her story. Through the birth mom panel at the Minnesota Organization on Fetal Alcohol Syndrome, she speaks several times a month in prisons, drug and alcohol treatment programs and at domestic violence shelters, where women are more likely to abuse alcohol and where the organization targets its prevention and support efforts.
She was recently asked to be part of a statewide group charged with coming up for recommendations on what to do with pregnant women who are referred to child protection services because of their drug and alcohol use. A few weeks ago, she went with Richardson to speak to a gathering of health providers in St. Paul.
"She is so passionate," said Richardson. "At the end of the day I'm ready to pack all this stuff up and she's still there handing brochures out to people. She is like, 'we're going to talk to every person here.' "
Morgan is mentoring a young pregnant woman who just stopped drinking heavily. She has tried to talk about fetal alcohol spectrum disorders with her family. Her mom listens, she said, but not everyone wants to hear it.
"My other relatives are like, 'Oh, girl, that's something that white people made up.'
"I'm like, 'No. Noooo. It's not.'
"Or they'll say, 'there aren't no such thing as that, girl. Your baby is in a sac.' They're like, 'Girl, I drank my whole pregnancy. Ain't nothing wrong with my kids.' "
"I believe God put me in this position. Not that he caused it to happen to my daughter. That was all me. But I believe this is now my calling. It's God saying, 'OK, this is your opportunity to make things right. I'm going to open up these doors for you.'"