Special thanks to Sruthi Muralidharan from "No BS about DS" for co-authoring this profile.
Catherine and her mom, Aimee, are superstars in the world of breastfeeding if you ask me. Catherine, who turned a year old in June, was born with Down syndrome, duodenal atresia, a blocked common bile duct and several heart complications including a complete AV canal defect with tetralogy of Fallot. She required multiple surgeries soon after birth to remedy these issues and spent the first eighty days of her life in the hospital.
Catherine’s first surgery, the repair of her duodenal atresia, happened when she was just four days old. Duodenal atresia is a malformation of the small bowel that makes it impossible for the stomach contents to pass into the rest of the GI tract. It is a relatively simple repair but the condition can be life-threatening if it is not done soon after birth. While Catherine was healing from her duodenal atresia repair she had to receive all feedings through a nasogastric (NG) tube (a small tube is threaded in one nostril, down to the stomach). She kept the NG tube in for more than 4 months.
From the time Catherine was born Aimee worked with the lactation consultants at Boston Children’s hospital to pump and develop her milk supply. Catherine was given this milk, fortified with formula to increase the calories, through her NG tube, which allowed her to receive many of the benefits of breast milk, including the protective antibodies and the custom-designed nutrition while ensuring that she was receiving enough calories to thrive.
Catherine’s congenital heart disease required that her heart and lungs work overtime to meet the demands of her basic metabolic processes and so she didn’t have any reserve left over to nurse. Additionally, Catherine’s low tone, caused by her Down syndrome, meant she had a weak suck and put her at risk for aspiration. Despite all the health challenges, Aimee was determined to breastfeed Catherine. Aimee says, “From the moment I found out that Catherine would have Down syndrome my only thought was that we will be fine if she could breastfeed”. Having a newborn in such a medicalized environment and not being able to take her home and just enjoy her seemed incredibly abnormal to Aimee and she felt that being able to nurse would bring normalcy to their situation. She was lucky to have had the experience of nursing her older child and was committed to nursing Catherine, too. With the encouragement of lactation consultants at Boston Children’s Hospital Aimee began to pump to establish her milk supply. Meanwhile, they continued trying to get Catherine to latch properly, working with her frequently with the ultimate goal of having her directly nurse at the breast. After her heart repair, Catherine gradually began to have longer periods of wakefulness and her suck became stronger and more coordinated.
At about four months old Catherine and Aimee were at home and Catherine pulled out her NG tube and Aimee thought this is it; we have to make this work. Aimee felt like Catherine needed to take this opportunity to figure out how to directly nurse at the breast because she knew she couldn’t keep pumping. Children who have a history of an NG tube from birth sometimes have oral aversions and have a difficult time taking anything by mouth. However, Aimee put Catherine to breast and she nursed like she had been doing it for her whole life. “It was like all the stars aligned for her…and for me…I felt … we can really do this.”
Despite significant medical challenges, several surgeries, and weeks in the hospital Aimee and Catherine persevered. Aimee’s desire to have Catherine nurse at the breast was always in the forefront of her mind. Even though pumping can be difficult she feels that the reward was worth it. Now that Catherine is nursing directly at the breast the relationship is even sweeter since she knows how hard she and Catherine both worked to get to where they are now. When asked what advice Aimee would give mothers out there who want to breastfeed their babies with Down syndrome she says “I just want to tell you: don’t give up. You can do it and you can do it together.”
Photo: Courtesy of Nicole Starr Photography.