Down syndrome: Reimagining what’s possible

Ella kisses baby Juila on the cheek.
Photo credit: Nicole Starr

I first met Ella Gray Cullen in the Advanced Fetal Care Center (AFCC) of Boston Children’s Hospital, shortly after she had received a prenatal diagnosis of Down syndrome. Like many parents expecting babies with conditions that can be diagnosed prenatally, she wanted to know more.

We talked about the additional medical screenings that would be recommended for her daughter to evaluate for cardiac defects and other conditions that are more common in children with Down syndrome. We discussed the developmental supports through Early Intervention and school that would be available to help her daughter learn and develop to her best ability. And, we talked about breastfeeding.

Can babies with Down syndrome breastfeed?

Babies with Down syndrome typically have low muscle tone that can affect their ability to latch and to coordinate suck and swallow. Sometimes this can present a challenge for breastfeeding. This has led some health professionals to wrongly conclude that babies with Down syndrome can’t breastfeed, and even discourage their mothers from trying.

Boston Children’s supports all mothers and babies, including those unable to breastfeed and those who prefer to bottle feed. ~ Dr. Emily Jean Davidson

The truth is that many babies with Down syndrome are able to breastfeed right from the beginning with no special help. Some babies need a little help from a lactation consultant to learn what positions or techniques work best. Some babies who cannot breastfeed initially because they have difficulty latching on or are too sick to nurse, can breastfeed quite successfully a few months later.

Julia’s journey

Ella had very much hoped to breastfeed her baby, so I encouraged her to connect with Boston Children’s lactation specialists who could provide consultation prenatally as well as once the baby arrives. I recommended that Ella become an advocate for breastfeeding her daughter and get any support she might need to do it successfully.

Ella cradles baby Julia in her arms.

Julia Grace was born on May 25, 2016. Health complications made feeding difficult at first and after an 8-day stay in Boston Children’s Neonatal Intensive Care Unit (NICU), she went home taking breast milk from a bottle. Ella gradually introduced her to breastfeeding and by 3 months, Julia was able to breastfeed exclusively. “I’m so grateful to have been encouraged and supported in my desire to maintain a breastfeeding relationship — even while inpatient,” says Ella.

Today, Ella is paying it forward. She has become an advocate for all mothers, teaching them that it is indeed possible to breastfeed babies with Down syndrome. She started Julia’s Way, a non-profit that “reimagines what’s possible for those living with Down syndrome,” is working on a book on breastfeeding babies with Down syndrome and is creating materials to help educate professionals.

Julia easts cake on her 1st birthday.
Julia celebrated her first birthday in May with a unicorn-themed party. Photo credit: Tony Bacon.

As for Julia, she is learning new skills like pulling up to stand and trying to talk, and has just started dancing whenever she hears music. “The best part about parenting Julia is that she, her father and I laugh together every day. We couldn’t be happier and we wouldn’t change her for the world … but we would change the world for her.”

Learn more about Boston Children’s Down Syndrome Program.

About the blogger: Emily Davidson, MD, MPH, RYT is the director of prenatal services at Boston Children’s Down Syndrome Program, where she also sees children with Down syndrome from birth to 21.​ She is an attending physician in the Complex Care Service caring for children with complex medical needs within the Cerebral Palsy Program. Dr. Davidson offers Reiki and yoga for families through the Hale Family Center for Families’ Family Wellness Program.