LLL Today #4 – Julia’s Way

The LLLI Online Conference held in October 2021 featured a session by Julia’s Way. Ella Gray Cullen, Jill Rabin, and Rachel Murphy presented the session. They shared their experience of working with babies with Down syndrome and supporting their mothers to breastfeed.

Established in 2016 and recently integrated into the Massachusetts Down Syndrome Congress’ National Parents First Call Center, Julia’s Way seeks to inspire parents, medical professionals, and the general public about the realities and benefits of breastfeeding babies with Down syndrome through education, advocacy, and awareness.

Julia’s Way has set out to prove and celebrate that mothers can indeed breastfeed their babies with Down syndrome, a truth not widely accepted, even in the medical community. Research shows that breastfeeding has numerous benefits, particularly for babies with Down syndrome. A survey by Julia’s Way revealed that 20 to 30 percent of mothers were told that their babies with Down syndrome were not as capable of breastfeeding as other children. However, with time and support, many, if not most, are just as capable of breastfeeding as any other child. 

Often babies with Down syndrome have co-occurring medical needs, many of which are improved by breastfeeding. Studies have shown that breastfeeding helps create a wider upper palate, and optimal shaping of the oral cavity could potentially prevent or reduce the impact of obstructive sleep apnea which is prevalent in individuals with Down syndrome. Oral structural changes from breastfeeding could also positively impact speech development and clarity as well. Breastfeeding provides sensory stimulation, and human milk aids in brain development. Breastfeeding improves the immune system, which is very important for the many babies with Down syndrome who need surgery and other procedures. It is important to know that all these benefits have an effect into adulthood.

When supporting a mother or parent expecting a baby with Down syndrome, one of the most important things to think about is preparation for pumping and/or hand expressing. The baby may have medical complexities that will impact how much milk they can get. Skin-to-skin contact and frequent pumping help to maintain the supply. Pumping also provides milk for the baby to grow and thrive until they can nurse.

Babies with Down syndrome are often very sleepy and have low muscle tone.  This may pose problems for nursing, particularly if a breastfeeding mother is not supported to wake the baby and nurse frequently. Jill shared the story of a mother with a strong desire to breastfeed. She was given well-meaning advice that she should rest at night and pump only during the day. Jill supported the mother to pump around the clock with a hospital-grade pump and provide many opportunities for skin-to-skin contact. With lots of support and sound, evidence-based information, she was finally able to exclusively breastfeed when her baby was five months old.

Rachel, Ella, and Jill finished their session with a beautiful video that can be viewed on their website (https://mdsc.org/juliasway/). It tells the stories of many successful nursing families.

Further reading:

Kristen Tenglin and Ella Gray Cullen