The Massachusetts Down Syndrome Congress (MDSC) and Julia’s Way are pleased to announce that Julia’s Way, which was established in 2016 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, will now be integrated into the MDSC National Parents First Call Center. In its new home, Julia’s Way will continue to inspire and encourage mothers of children with Down syndrome to breastfeed their babies while simultaneously educating medical professionals on how to support mothers to help their babies breastfeed successfully.
When Ella Cullen was pregnant with her daughter, she heard wildly different things from parents of children with Down syndrome (Ds) and from the public and medical professionals. “Congratulations! You don’t know how lucky you are,” said the parents. None of them ever said “I’m so sorry” like some friends and strangers did. Later, she found out that parents of children with Down syndrome often consider themselves #theluckyfew and understand that there is #nothingdownaboutit. Ella didn’t know who to believe but she and her husband were committed to loving their child the best they knew how. It didn’t take them long to realize that the parents knew what they were talking about. Their daughter was, and is, the brightest star in their sky. Ella started Julia’s Way to help others reimagine life with Down syndrome so that her daughter, and all individuals with Down syndrome, can have the best possible life.
Not too long ago, breastfeeding babies with Down syndrome was considered unnecessary and unlikely to be successful. With just one beautiful photo, Julia’s Way changed the conversation about what babies with Down syndrome can do.
Julia Grace is Ella’s daughter. She was born in 2016 after a fairly traumatic pregnancy. She was diagnosed with Down Syndrome at approximately 20 weeks gestation. Before that, Ella and her husband were uncertain about their future and only knew that something inconsistent with life could be wrong with their sweet girl. When they found out that she had Down syndrome, she and her husband gave each other a high five, incredibly relieved but also scared. Ella’s husband had worked with many children with Down syndrome, but she had not even known anyone with that diagnosis. What they did know was that their child could have a happy, healthy, and fulfilling life. She could spend time outside hiking and enjoying nature with them; she could contribute meaningfully to society. When her life seemed to hang in the balance between the time they found out “something was wrong” to the time they received her diagnosis, Ella and her husband made many lists of what they wanted for her and those were the things they wanted most. Far from being “something wrong,” Julia is exactly and perfectly right. Learning more about Down syndrome helped them to reimagine life with Down syndrome and, nearly from the moment they heard the diagnosis, Ella has dedicated herself to helping others reimagine life with Down syndrome as well.
Distributed in partnership with Down Syndrome Pregnancy, this book is the first of its kind and provides comprehensive, evidence-based information for both mothers and medical professionals. The book is written by medical experts in an easy-to-read style and addresses everything from how to prepare prenatally to breastfeeding after heart surgery to how to transition a baby from tube feeds to the breast. We are confident that this book will inspire and inform mothers and will be a trusted resource for medical professionals seeking to help their patients.
Because Julia’s Way was born out of a deep commitment to helping mothers breastfeed their babies with Down syndrome, the book is available as a FREE DOWNLOAD. Proceeds from any print copies go directly to Julia’s Way to help continue the important work of supporting mothers who want to breastfeed their babies with Down syndrome.
“Breastfeeding babies with Down syndrome is not only possible but important—a gift packed with health benefits for moms and babies alike. This book is an essential resource for all new parents who are beginning their remarkable journey with a newborn who has Down syndrome.”
– Dr. Brian Skotko, MD, MPP
FOR MOTHERS
- Offers advice on everything from preparing to breast- feed, to breastfeeding after heart surgery, to getting to the breast after tube feedings, and much more.
- Includes everything you need to know to successfully breastfeed your baby, including dozens of mothers’ stories to help reassure you that babies with Down syndrome CAN breastfeed.
- Written by experts in their fields using the latest evidence-based research.
“I am so happy to see this book come to fruition! Having this information available not only to parents, but to professionals and caregivers that support parents will be such a huge step in the Down syndrome community!”
– Jessie Bohlander, Mom of Lily
FOR MEDICAL PROFESSIONALS
- Concrete guidance on how your patient can prepare to breastfeed, manage her baby’s low tone, breastfeed after heart surgery, transition to the breast after tube feedings, and much more.
- Chapters written by experts in their field, using the latest evidence-based research.
- Pro Tips designed specifically for medical professionals.
- Mother’s stories to inspire and encourage both you and your patients.
“I am delighted to recommend wholeheartedly the comprehensive and supportive Breastfeeding & Down Syndrome to both families and the professionals who serve them. Thank you, Julia’s Way, for creating this incomparable book!”
– Nancy Mohrbacher, IBCLC, FILCA, Author: Breastfeeding Solutions and the Breastfeeding Solutions app
All of the authors are leaders in their field. They include:
Kimberly Barbas, BSN, RN, IBCLC
Kathleen Carr, DNP, RN, CPNP
Ella Gray Cullen, RN, CLC
Kathryn Davidson, MS, CCC-SLP, BCS-S
Emily Jean Davidson, MD, MPH, RYT
Kayla Hernandez, MS, CCC-SLP, BCS-S
Rachelle Lessen, MS, RD, IBCLC, LDN
Jill Rabin, MS, CCC-SLP/L IBCLC
Jenny Thomas, MD, MPH, IBCLC
Marsha Walker, RN, IBCLC
Jeanette Zaichkin, RN, MN, NNP-BC
This brochure, written by Jill Geschwint Rabin, an IBCLC and pediatric speech pathologist, and Ella Gray Cullen, Founder of Julia’s Way and mother of a child with Down syndrome, with input from Kimberly Barbas from Boston Children’s Hospital and Dr. Emily Jean Davidson from the Down Syndrome Program at Boston Children’s Hospital, is designed to support mothers and medical professionals to understand and overcome the challenges that babies sometimes face when attempting to breastfeed.
These are perfect for inclusion in new parent packets and distribution by genetics counselors, NICUs, labor and delivery floors, and Down syndrome clinics.
The brochure is also available as a one-page handout. The content is the same in both the one page (downloadable) and printed (tri-fold) brochure. The downloadable brochure for new and expectant parents is available in multiple languages! Or, click here to order professionally printed brochures (available in English and Spanish).
Each month, we offer a virtual support group for breastfeeding, pumping, and expectant mothers of babies with Down syndrome, co-moderated by Jill Rabin, SLP, IBCLC and Rachel Murphy, RN, IBCLC mother of breastfed child with Down syndrome. Come share about your journey, meet other mothers, and ask any questions you may have! Common topics include sleepiness, weight gain, NICU stay, getting back to breast, breastfeeding with cardiac or other conditions or surgeries. Please note time zone and adjust accordingly.
We may occasionally welcome medical students or approved medical professionals who are interested in gaining information and insight about breastfeeding babies with Down syndrome to benefit their knowledge and practice.
To ensure the respectful space of expectant and new moms, we ask that you find a private space for this meeting and please note that dads/male partners are not allowed to participate. We hope you appreciate the sensitivities and safe space we provide. We look forward to meeting you!
The group is free, but advanced registration is required.
These moms have come together with a powerful message: babies with Down syndrome CAN breastfeed.
As many as 30% of mothers are told that their babies with Down syndrome may not be able to breastfeed or will be unable to do it as well as other babies. This video is a counterpoint to those voices and seeks to be a source of hope and inspiration for new mothers who wish to breastfeed their babies. It features 11 women discussing their journeys to breastfeeding their babies with Down syndrome. They persevered through NICU stays, hospitalization, illnesses, surgeries, leukemia, heart failure, and more to breastfeed their babies, and they are here to encourage and support you in breastfeeding your baby, too.
Ella Cullen, Founder of Julia’s Way, has this to say about the project: “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 mother 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 who want to attempt breastfeeding but just need support or encouragement, we are here for them.”
Many, if not most, children with Down Syndrome are capable of breastfeeding. However, it frequently takes them a little longer. Many moms who are committed to breastfeeding, pump for their babies for a few weeks or months before they are strong enough to nurse on their own. The best advice is to seek out the support and advice of an International Board Certified Lactation Consultant who believes in your baby’s ability to nurse and can support you through the journey.
Visit our Resource Library for a comprehensive list of breastfeeding resources.
For more information about Julia’s Way, contact us at juliasway@mdsc.org.
