Papers: Parent Experiences and Implications

Nystagmus in Down syndrome

Dr Maggie Woodhouse¹, Nicola Enoch²

1. University of Cardiff
2. DSUK and Positive about Down syndrome (PADS)

woodhouse@cardiff.ac.uk

Nystagmus (wobbly eyes) is common in children with Down syndrome and is a life-long visual impairment. In our recent research we have reported the visual disadvantage that nystagmus confers on children. Parents and teachers are not always aware that children with Down syndrome and nystagmus have visual problems. Positive about Down syndrome has conducted a survey among 59 parents of children with nystagmus and we have the somewhat shocking statistic that ONE THIRD of parents were not told anything about how nystagmus affects vision by the hospital. Parents are left to find information for themselves, or in some cases, parents never realize that their child's vision is poor. In those unfortunate cases, children's difficulties are probably put down to the learning disability, when simple adjustments to home and school would allow the child to learn far more easily. In this presentation we will describe the impact of nystagmus and give the full results of the parent survey.

Summary

• Nystagmus (wobbly eyes) is a life-long visual impairment that is common in children with Down syndrome
• Both parents and teachers often do not know that Nystagmus can impact vision
• Positive about Down Syndrome conducted a study and one third of parents were not told this at the hospital, they are left to find this out themselves, or never even realize.
• In those cases, the child's difficulties to learn may be put down as due to having a learning disability, where in fact, simple adaptations to school and home will help them learn more easily.

Breastfeeding a Baby with Down Syndrome

Nicola Enoch, Positive about Down syndrome

nicola.enoch@downsyndromeuk.co.uk

Positive about Down syndrome currently supports approximately 150 expectant and more than 1,500 parents of preschool children across the UK. Over the past couple of years, it has become increasingly evident that parents are not receiving the information and support they need around breastfeeding a baby with Down syndrome. A survey was designed and we collected the breastfeeding experiences of 329 mothers of babies with Down syndrome in the UK, born between 2016 and July 2021. While 77% of the mothers did initiate breastfeeding, the findings corroborated the concerns we picked up in our support services - that there is an expectation that babies with Down syndrome will struggle to breastfeed and women are poorly informed and supported. A summary of the findings will be presented and the implications for services discussed.

Summary

• Positive about Down syndrome support approximately 150 expectant and 1500 parents of pre-school children and it has become evident that they are not receiving adequate information and support about breast feeding a child with Down syndrome.
• A survey was completed by 329 mothers of babies with Down syndrome who were born between 2016 and 2021 to highlight the difference in the perceived and reality of breast feeding a child with Down syndrome.
• The survey found:
  • 77% of mothers breastfed their baby
  • 46% had been advised by a healthcare professional that they may not be able to breast feed purely due to the baby having Down syndrome
  • 54% expressed they felt they didn't receive enough support from their midwifery team
  • Of the 23% that did not breastfeed, 89% had planned to.
  • At six months, 66% were breastfeeding; this contrast to UNICEF's data that said only 34%
  • 27% of mothers breastfed beyond 18 months
• The psychological needs of the mother should also be considered. Being told about the inability to breastfeed at a time when a mother may feel disconnected from her child and struggling to bond can often have negative impacts on mental health.
• It is important for healthcare professionals to not just assume you will struggle/not be able to breast feed your baby with Down syndrome – they should consider both mother and child's individual needs.

Links:

https://positiveaboutdownsyndrome.co.uk/breastfeeding/

https://positiveaboutdownsyndrome.co.uk/breastfeeding-report-2021/

https://www.facebook.com/groups/dsukpadsbreastfeedingpeersupport