Breastfeeding, Donor Milk and Down Syndrome

Our breastfeeding journey started out different than I imagined at the start of my pregnancy. Having nursed my daughter Kaylee Dee for 21 beautiful months, I felt sure that I would nourish her younger sibling just as effortlessly for just as long, if not longer. Enter: a Down syndrome diagnosis coupled with duodenal atresia, and I knew my younger daughter, Everly, and I would take a different path.

I would do whatever it took to make sure she was given that precious liquid gold, so the day she was born I kept bugging the nurses to make sure they didn’t forget to bring a hospital-grade pump to my recovery room. In between visiting Everly in the NICU, I pumped. Every two hours, while waiting for her to come out of surgery, while my husband David and Kaylee Dee visited, in between going upstairs to gently hold her hand and caress her little face in her incubator, I pumped. I felt helpless and like every aspect of being a mommy had been taken away from me.

Mom pumping breast milk
Sydney’s daughter Kaylee Dee helping her mom pump breast milk

I may not have gotten to nurse my babe upon birth, or cradle her little body, or sleep with her next to me in a little sleeper I had carefully chosen. I didn’t get to give her sponge baths or gently clip her nails. But I could prepare for the day she was able to eat. So I pumped around the clock, setting my alarm and buzzing the nurses in the middle of the night every three hours to bring Everly’s carefully pumped and labeled breast milk up to the freezer in the NICU.

I continued this when I was discharged and moved into the Ronald McDonald House of Northwest Florida, using the hospital-grade pump in their Nursing Nook and one of the three pumping rooms they had in the NICU. I was getting an impressive 40 to 60 ounces of breast milk per day, just building up a stash for when Everly was finally able to take her first tiny bottle of colostrum when she was 15 days old. She was in the NICU for 32 days while I continued exclusively pumping, because while the NICU doctors were very pro-breast milk, they were not pro-breastfeeding. Down syndrome also adds a challenge to breastfeeding. Everly was born with low muscle tone; so low, in fact, that her speech therapist labeled it as a zero (as in none) in her cheeks, which of course meant she struggled to have the stamina or a proper latch.

We came home to speech therapy where we were given a Bionix special feeding bottle to help teach Everly how to eat correctly and which muscles to tone up in order to have a good latch. After being home for about two weeks, I got mastitis which tanked my supply. It got down to only being able to get 6 ounces a day. I was so thankful for the large stash I had in the freezer to hold us over while I got my supply back up using different supplements. All told, I’ve used Reglan (which made me exhausted), fenugreek, Motherlove Tincture, Mother’s Milk Tea, Blessed Thistle, Motherlove Capsules, Domperidone and lactation cookies, which worked wonders for a short period of time.

baby girl wearing pink bow breastfeeding
Everly breastfeeding

I was able to get my supply back to either the full amount she needed per day, or just 5 ounces shy of her intake. When she was around 5 months old, I ran out of my stash that was holding us over and found out about Human Milk 4 Human Babies, an online community for milk sharing. Everly has been the recipient of donor milk from several generous women. As she grew stronger, she was able to nurse occasionally, but never as her only source of nutrition since she still lacked the muscles to nurse efficiently.

I kept up my pumping routine until just three days short of Everly turning 8 months old — a feat I’m both proud of and disappointed in. I worked hard, pumping at work, in the middle of the night and all throughout the day, while trying to come up with different ways to entertain two little ones when I couldn’t get up and hold them. I didn’t make the choice, and neither did Everly, to stop breastfeeding, which is why I’m disappointed. Today I pumped four times in the morning, each time without producing a drop of milk. My body finally gave in and the supplements quit working. We still have donor milk and will hopefully continue to receive breast milk until Everly is at least 1 year old, if not for longer.

I can’t speak enough about the wonder that is donor milk. We’ve been the recipients of milk from a sweet first-time mother who had her own early breastfeeding struggles but pushed through and is still going strong, a mother who lost her sweet baby shortly after birth and continued pumping for months as therapy, a woman from a nearby town with some extra ounces to spare, and from a mother who I met on Human Milk 4 Human Babies and now consider a friend, who provides milk for two babies in addition to her own. She is a rockstar and I am so glad I found her. I’ve been given support and advice on a Facebook site called Hot Moms Breastfeed — a title well-deserved by the women on that page because they are beautiful, both inside and out.

All of these women have reminded me in the most raw, natural part of mothering that it takes a village, and I will be forever grateful that they became part of my village, for however long they were there.

Mom feeding her baby a bottle
Sydnie feeding her daughter Everly

Follow this journey on SugarandspiceKDnE.

Editor’s note: This is one person’s experience and should not be taken as medical advice. 

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

'Born This Way' Renewed for Second Season

“Born This Way,” a new docu-series that puts the spotlight on people with Down syndrome, will be getting a second season. A&E Networks announced Wednesday it is renewing the critically acclaimed show, which premiered on Dec. 8. The six, hour-long episodes follow seven people from Southern California as they pursue career goals and romantic relationships, form friendships, overcome obstacles [...]
Connor Long and Hanna Atkinson on set. / Courtesy of Special Olympics Colorado

Duo Become First Reporters With Down Syndrome at Local News Station

Two Special Olympics athletes are now the first reporters with Down syndrome to work at Denver7 News, an ABC affiliate. In a weekly series, Hanna Atkinson, 21, from Littleton, Colorado, and Connor Long, also 21, from Louisville, Colorado, conduct interviews and host segments on the athletes, coaches, volunteers and families of Special Olympics Colorado. They work in [...]

Clerk With Down Syndrome Gives Special Needs Mom a Moment She'll Never Forget

With just a simple gesture, a Ralph’s grocery clerk in Mission Viejo, California, made one mom’s day. On Tuesday, the clerk named Sydney approached Mighty contributor Suzie Skougard and her 17-month-old daughter Carly. Skougard had met Sydney before — when she was pregnant with Carly, she’d make a point to wait in Sydney’s line, even if [...]

What No One Told Me When My Child With Down Syndrome Was Born

She turned my world upside down four years ago. In December 2011, we were preparing for the birth of our second daughter. We thought we were ready. We thought we knew what to expect. All of the ultrasounds were OK. Besides the occasional, “She’s just measuring a bit small,” everything seemed fine. We walked (well, [...]