Major Breakthrough on Fetal Alcohol Syndrome has Huge Implications for Child Welfare System

One or two decades from now, we might look back at a Northwestern University study completed this month as a major turning point in the history of child welfare, foster care and adoption.

Researchers announced this month that two substances have shown to be effective in rolling back some of the effects of Fetal Alcohol Spectrum Disorders (FASDs), a slate of conditions conferred to babies born to mothers who drink during pregnancy.

Researchers found that two medications (the hormone thyroxine and the drug metformin) removed learning and memory problems usually associated with FASDs when provided to alcohol-exposed baby rats after birth.

When the rats in the Northwestern study reached adulthood, they were compared with other alcohol-exposed rats that had not been given either drug. The rats that had been treated with the thyroxine and metformin demonstrated no memory issues or learning problems.

We are probably years away from potentially proving the efficacy and safety of this on human babies. But if that happens, it is not hyperbole to say that this will immediately become one of the most significant advances in child welfare history.

“We’ve shown you can interfere after the damage from alcohol is done. That’s huge,” said lead investigator Eva Redei in a press release. “We have identified a potential treatment for alcohol spectrum disorder. Currently, there is none.”

FASDs are a set of conditions that tend to occur in a person whose mother drank alcohol during her pregnancy. These conditions include physical deformities, low weight and height, poor coordination, learning disabilities and behavioral issues. FASD is also the leading known cause of mental retardation in America today.

But these mental and physical challenges are often not traced to FASD, especially in children who end up in foster care and/or become available for adoption. This can leave foster and adoptive parents to wonder in terror what is causing their children’s pain.

The following was shared by Alison Caliendo, an adoptive mom and executive director of Foster Kinship, in an e-mail to Youth Services Insider:

“We were our son’s foster parents and we adopted him when he was 18 months old. We know his biological mother drank alcohol and used a range of illicit substances, including meth.

We started noticing around 12 months that he was easily frustrated and would scream in a high pitched wail. Once he was triggered, it would be very hard for him to come back to us. Once he was calm, which could take several hours, he would not seem to recall what had happened.

He would hit his head against the wall. He was often inconsolable and his level of rage became more and more alarming to us. As he got older, he became more aggressive toward children at daycare. He was asked to leave many day care centers due to his violent behavior toward other children. He began trying to hurt us when he would melt down.

We have done everything we can to get the support we need. He had early intervention services and now is in a special program with the school district. He has occupational therapy, in-home basic skills training, and a pediatric neuropsychologist. We know the next step will be to see a psychiatrist. We anticipate that we will have to home school him so that he is able to keep himself and others safe.

As parents, we often feel we are failing him and it is easy to become depressed and discouraged. We seek out support from other foster/adoptive parents who understand, and we make time for ourselves so that we can continue to have the energy to care for him.”

There are more unknowns than knowns when it comes to FASD. In a series of columns for The Chronicle back in 2013, Helen Ramaglia, the adoptive mother of a child with an FASD diagnosis, called it “a silent crisis.”

A recent study of 7- to 9-year-olds, conducted by Centers for Disease Control and Prevention, found FASD in .3 of every 1,000 children. But the CDC notes that “studies using in-person assessment of school-aged children in several U.S. communities report higher estimates of FAS: 6 to 9 out of 1,000 children.”

Data from California showed that 40.6 percent of infants referred to child protective services have a positive diagnosis for substance exposure, meaning either drugs, alcohol or both.

There also isn’t much available in the way of hard data when it comes to the social cost of FASD, but the estimates are high. The National Organization on Fetal Alcohol Syndrome (NOFAS) uses the number $5.4 billion as an annual cost for just Fetal Alcohol Syndrome. The federal Substance Abuse and Mental Health Services Administration’s review put the majority of estimates between $2.3 billion and $4.7 billion.

Consider how much of a game changer it would be for foster and adoptive parents if some of the most vicious effects of alcohol exposure could be rolled back at birth with medication. The value of effective interventions against FASD is hard to quantify, in either dollars or tears shed by these families.

Further, factor in the even larger potential benefit on maltreatment prevention, because the effects of FASD can be the stressors that cause a foster care removal. The aforementioned California study found that nearly 54 percent of children who test positive for substance exposure are not referred to CPS. Could a mom’s chances of addiction recovery be enhanced if some of the significant stress from raising an FASD-diagnosed child is removed?

Jodee Kulp, an adoptive mom who wouldn’t find out for years that her daughter had FAS, expressed couched optimism about the new research.

“It may be a brilliant opportunity,” Kulp said, in an email conversation with YSI. “If it becomes, ‘Now I can drink because my child can have this after birth and be just fine,’ it could be a slippery slope.”

Kulp said she is also wary about the potential long-term effects of treatment on mothers, which might not become evident from a short-term trial.

“I am the child of a mother who took prescribed medication while pregnant to maintain a viable pregnancy,” Kulp said. “This medication created untold havoc in the lives of women who are now in their 50s to 70s.”

“On the other hand,” Kulp said, “if it removes the stigma and guilt from mothers who drank alcohol and exposed the reality for the child earlier, there is much that can be done in early development to help a child.”

Kulp’s point there is key, because another huge problem with FASD is the diagnosis process itself. A 2009 report by the National Center for Biotechnology Information noted several “fundamental challenges” to diagnosing these disorders:

“Birth mothers may no longer be in their children’s life at the time of assessment, precipitating a reliance on indirect reports of maternal alcohol use during pregnancy. Even when alcohol exposure can be obtained, maternal self-report is often fraught with unreliability and under-reporting. This can be due to simple forgetfulness or from societal stigmas related to drinking during pregnancy, which may create maternal denial arising from awareness of the potential harm caused.”

Another problem, the report notes, is that some doctors appear to be influenced by the fear of stigmatizing moms:

“Even more worrisome is the admission by many physicians that they have suspected but not diagnosed FASD due to concerns of stigmatization and worries that the parents would resist referral for assessment and treatment (58). Societal stigmas must be addressed and improvements must be made in educational guidelines before primary care physicians can effectively assess and refer patients for the diagnosis of FASD.”

Without early detection or direct treatment for FASD, it is often too late to medically correct the damage done by these disorders. From adoptive mother Jodee Kulp, in her emails with YSI:

“Our daughter, Liz Kulp, was adopted as a toddler and not diagnosed with FAS until she was 12.5 years. An earlier diagnosis would have allowed us to understand we were working with brain damage and that her behaviors were symptoms of the central nervous system damage done before she was born.

Today, Liz is 31 years old and just as the central nervous system damage was missed in her childhood, the subtle physical internal anomalies have accumulated over time as she has grown older. Liz still struggles with memory and sensory issues. She is still challenged with limited executive function abilities.

The choice made to drink alcohol during the time she was growing in the womb has taken its toll on a vibrant and lovely human being. While friend’s children graduate from college and pursue careers and raise families, Liz struggles with medical issues that hinder her from moving forward. As her parents, we have dedicated our lives to creating a micro-world for her to live independently with the help of government supports and services. Sadly, all of this was preventable.”

The researchers published their findings in a July issue of Molecular Psychiatry, and are in the process of fundraising for clinical trials. Redei said a small clinical trial is in the planning stages to take place in South Africa, which has a high rate of FASD and “also because the system there is more in place to follow pregnant women who drink.” That study is expected to cost about $350,000.

“Ideally, we would love to carry out studies in the U.S.,” Redei told YSI,
“but so far we have not found partners in clinics or hospitals.”