Against the backdrop of a misty ocean and watercolor sky, ten mother baby couplets and their families gathered for a photoshoot to prove that babies with Down syndrome can indeed breastfeed, a truth not widely accepted especially among medical professions.
The photoshoot is part of phase one of a breastfeeding project by Ella Gray Cullen, founder of the non-profit Julia’s Way, after her daughter Julia Grace. Nicole Starr Photography captured the celebratory nature of Cullen’s overall mission to “reimagine life with Down syndrome.”
The darling stars of the Julia’s Way photoshoot– Julia Grace, Emily, Mae, Oliver, Lewis, Harper, Rian, Cate, Rory, and Cayden– have been shared widely on social media pages including La Leche League, Occupy Breastfeeding and Nationwide Nurse-In Facebook pages as well as Love What Matters Facebook page which has seven million followers.
Making it known that breastfeeding is possible for babies with Down syndrome is ever important as the negative effects of not providing human milk and breastfeeding on babies born with Down syndrome are robust. Even so, Cullen reports that 20 to 30 percent of women are told that their babies with this diagnosis are not as capable of breastfeeding as other children.
Her research comes from an infant feeding survey she conducted of over 500 mothers of children with Down syndrome, which will eventually be converted into an academic paper. Cullen anticipates the paper will help identify what helps mothers of babies with Down syndrome achieve their infant feeding goals.
Next on Cullen’s schedule is the release of a video which will feature the infant feeding stories of the mothers who participated in the photoshoot. The video is set for release during World Breastfeeding Week. Currently, Cullen features the “Breastfeeding Superstars’” stories on the Julia’s Way blog.
A book and accompanying website that will serve as a comprehensive resource for new mothers seeking information on how to help their babies with Down syndrome breastfeed successfully is also part of phase one. The book will be available as a free download and a print version will be available for a nominal fee to cover printing costs and shipping.
Julia’s Way is currently working to establish a database of lactation professionals who specialize in working with babies with Down syndrome.
The second phase of the project focuses on developing resources for medical professionals so they may properly support women to breastfeed their babies with Down syndrome. Last week on Our Milky Way, we featured the story of Ashley Albright, a mother of a child with Down syndrome, which exposes the dangerous deficit of infant feeding support to those with children who are medically complex.
Cullen’s breastfeeding advocacy dates back to before Julia Grace was born while Cullen worked in the medical field.
“I have been a huge proponent of breastfeeding for years,” she writes on her blog. “As a former labor and delivery nurse and a one-time midwifery student I believe the benefits cannot be overstated and have always encouraged people to consider it. I find it comical how little understanding I had of breastfeeding when I was instructing my patients and now that I have personal experience I understand how challenging it can be in those early weeks and how much persistence it can take.”
Cullen’s infant feeding story is atypical in that she received feeding support during their hospital stay and at home.
While Cullen says she was internally determined to breastfeed, she writes on her blog: “I know I would not have had the ability to be successful without [lactation professionals] and am grateful that they believed in me and in Julia Grace’s ability to nurse eventually.”
Julia Grace breastfed directly for the first time at 11 weeks. That meant that Cullen pumped exclusively for those 11 weeks, ten to 12 times each day which amounted to at least 40 hours per week of the pumping routine (cleaning equipment and bottles, storing, etc.)
“It was exhausting and tough,” Cullen remembers.
Her experience allows her to remain realistic about the challenges of providing milk for a medically complex child. She includes this project “disclaimer:”
“Our project has always been about supporting mamas who want to and can pump or breastfeed. We understand that babies with Down syndrome can have medical complexities that may be overwhelming at times and there may be other priorities for the family and the medical team. Our intention is not to add a layer of difficulty to what can be a stressful time. However, no mama should ever be told that she shouldn’t even bother to breastfeed her baby just because of a diagnosis of Down syndrome and for those mamas who want to attempt breastfeeding but just need support or encouragement, we are here for them.”
Cullen will attend this year’s Down Syndrome Diagnosis Network – DSDN Rockin’ Moms Retreat in Chicago where she will woman a table to share her vision for reimagining life with Down syndrome.
Get involved with Cullen’s mission:
- Share your stories.
- Share your professional infant feeding photographs to be included in her upcoming book.
- Donate to the cause. There are several ways to support Julia’s Way which can be found on the Julia’s Way Facebook page.
You can get in touch with Cullen here.