1 in 100 babies: why we created a fetal alcohol spectrum disorder pathway
Many women are unaware that even low level alcohol consumption during pregnancy is associated with developmental disability in children. Alcohol team leader Kerry Lyons reveals how she helped create an innovative pathway to identify drinking in pregnancy and inform women of the risks.
Many women are unaware that even low level alcohol consumption during pregnancy is associated with developmental disability in children. Alcohol specialist nurse Kerry Lyons reveals how she helped create an innovative pathway to identify drinking in pregnancy and inform women of the risks
Alcohol consumed during pregnancy is the nation’s leading preventable cause of developmental disabilities and birth defects. One in 100 babies is estimated to be born with alcohol-related damage according to the World Health Organization. FASDs (fetal alcohol spectrum disorders) are more common than autism, but sadly massively under-diagnosed.
I lead the HALS (Hospital Alcohol Liaison Service) at Tameside which, in collaboration with specialist midwife Mags Deakin, has developed and launched an innovative pathway aiming to help prevent FASD.
The pathway, which took nearly 18 months of hard work to develop, ensures a seamless approach to both the identification of alcohol consumption in pregnancy and subsequent education offered to pregnant women around preventing developmental disability associated with low level alcohol consumption.
It enables increased screening throughout pregnancy via the TWEAK screening tool, with a clear message delivered to all women of ‘NO alcohol = NO risk’. We are aiming to empower mothers to make an informed choice. The pathway also enables maternal drinking to be recorded within a proforma in paediatric notes, aiding future FASD diagnosis.
It is about giving the right message, to the right person, at the right time. However, the ultimate aim of this project is to bring specialist services together to prevent harm.
According to the American Academy of Paediatrics: ‘There is no safe amount of alcohol when a woman is pregnant. Research evidence is that even drinking small amounts of alcohol while pregnant can lead to miscarriage, stillbirth, prematurity, or sudden infant death syndrome.’
When a pregnant woman drinks alcohol, so does her developing baby. Any amount of alcohol, even in one glass of wine, passes through the placenta from the mother to the growing baby. Developing babies lack the ability to process, or metabolise alcohol through the liver or other organs. They absorb all of the alcohol and have the same blood alcohol concentration as the mother. It makes no difference if the alcoholic drink consumed is a distilled spirit or beer, or wine.
Alcohol is a teratogen, or toxic agent or substance, to a developing baby and can interfere with healthy development causing brain damage and other birth defects. Most babies negatively affected by alcohol exposure have no physical birth defects. These children have subtle behavioural and learning problems that are often not diagnosed at all or misdiagnosed as autism or attention deficit disorder instead of one of the FASDs.
Regular FASD education sessions have been delivered to the trust workforce and forms a mandatory requirement of the trust staff induction on alcohol awareness. Sessions are delivered by HALS nurses or Mags Deakin. The trust also has alcohol champions, who have received FASD training, in every area.
It is important to note that facial diagnostic markers (cranial-facial features of FASD) predominantly only occur in first trimester drinking. Second and third trimester drinking may result in no FASD facial features but moderate to significant neurological abnormality.
As well as our local project goals (summarised below), we want to raise the national profile of FASD prevention, reinforcing our message that alcohol harm is everyone’s business.
The project has been funded by a single £5,000 payment from Public Health (Tameside), which paid for electronic additionality for the trust maternal records. In addition to this, we have purchased two £250 dolls with cranial facial features of FASD to aid training.
Other than that, the project has been cost neutral, with both the small HALS team and specialist midwife collaboratively managing the delivery of education sessions and pathway work within their existing workload.
As a collaborative team, we can see the significant benefit of this pathway. If one in 100 babies are born with FASD levels of diagnosis are clearly very low and many are missing out on appropriate lifelong support. The cost savings of FASD prevention are significant, its value to the individual and to society immeasurable.
The three key areas of the pathway
- Screening for alcohol consumption in pregnancy at booking-in appointment and at 16 weeks using a low threshold tool. The results are electronically recorded on maternal records. This early intervention offers early teachable moments to use the no alcohol=no harm message and ensures mums are informed of risk.
- Positive scores lead to a seamless referral pathway to the hospital and community alcohol team for early, specialist intervention, offering support and guidance.
- Electronic recording then contributes to a discharge summary at term, including correspondence to the mother’s GP and the generation of a paediatric proforma for the child’s notes, potentially aiding future diagnosis in the absence of maternal drinking history.
Summary of the project’s aims
1. To launch a seamless approach to the prevention of FASD (Fetal Alcohol Spectrum Disorders).
2. To inform and educate mothers and fathers, aiding the prevention of FASD, and healthcare professionals throughout the trust and in the community.
3. To reinforce our trust-wide and community message of No Alcohol = No Harm.
4. Address an unmet need in respect to the unknown population of children and adults with FASDs.
5. Aid FASD diagnosis with maternal alcohol records in paediatric notes.
Kerry Lyons is hospital alcohol liaison service lead and alcohol specialist nurse at Tameside Hospital NHS Foundation Trust. Her team was a finalist in the Liverpool Victoria-sponsored Innovations in Your Specialty category of the RCNi Nurse Awards 2016