New Irish Study Wants to Hear From Mums Who Breastfed a Child With Down Syndrome

If you’ve breastfed a child with Down syndrome, or tried to, your experience matters more than you might realise. A new Irish research study called Bainne is looking to hear from mothers like you, and the team behind it are hoping to reach families well beyond the usual networks.

Led by Children’s Health Ireland (CHI) in collaboration with Trinity College Dublin, Down Syndrome Ireland and the Down Syndrome Centre, Bainne is the first study of its kind in Ireland to explore mothers’ lived experiences of breastfeeding a child with Down syndrome. It’s a meaningful piece of research that could genuinely shape the support and guidance offered to future families navigating the same path.

What the study involves

Participation couldn’t be simpler. Families are being asked to complete a short online survey that takes around 15 minutes. If you have a child with Down syndrome who is five years old or younger, you’re eligible to take part. The survey covers breastfeeding experiences as well as information about your child’s health at birth, any early health challenges, and what the neonatal period and early infancy looked like for your family.

The researchers are particularly keen to reach families who aren’t currently connected with support groups or charities. If you’ve been doing this largely on your own, without much formal support around you, your voice is exactly what this study needs.

Why this research matters

Breastfeeding any baby comes with its challenges. Breastfeeding a baby with Down syndrome can bring an additional layer of complexity — from low muscle tone affecting latch, to time spent in neonatal care, to navigating well-meaning but sometimes contradictory advice from healthcare professionals. Many mothers who’ve been through it will tell you they felt isolated or under-supported, and too often their experiences go undocumented.

That’s exactly what Bainne is trying to change. Fiona McGrane, a Clinical Nurse Specialist in Down syndrome at CHI, explains it well: “Bainne represents an important opportunity to better understand and document the lived experiences of mothers breastfeeding children with Down syndrome in Ireland. By listening to families and learning from their experiences, we hope to contribute to improved supports and awareness for future parents and healthcare professionals alike.”

The findings from this research will be used to improve awareness, support services and healthcare guidance for families of children with Down syndrome across the country. In other words, taking 15 minutes to fill in a survey now could make a real difference to how the next generation of families is supported.

How to get involved

If you’d like to take part or find out more, you can access the survey directly at rb.gy/adrwdk. You can also contact the research team by emailing fiona.mcgrane@tuh.ie.

And if you know another mum who might want to take part, pass it on. The research team is actively looking to spread the word as widely as possible, especially to families who might not have come across this through a charity or support group. Share it, text it, mention it at school drop-off. It only takes a minute to point someone in the right direction.