The first thing you notice about this week’s breastfeeding Superstar is her thick auburn hair that calls to mind a movie star from the 40s. Meet Mighty Mae and her mom, Cristina. Mae’s easy smile lights up her face and makes everyone’s day a little brighter. You would never imagine what she has battled, and won, to get to where she is today.
Mae was born full term and was a hearty 9 pounds. She spent the first 5 weeks of her life in the neonatal intensive care unit at Saint Elizabeth’s Medical Center and then an additional 5 weeks at Boston Children’s Hospital. She was born with several congenital heart issues, including atrial and ventricle septal defects and a Patent Ductus Arteriosus. She had her VSD/ASD/PDA repair at six weeks old but the surgery was complicated by a complete heart block. A heart block is a condition where the electrical impulses that normally instruct a heart to beat are either partially or totally blocked and so the heart beats too slowly. This can be a life-threatening condition and required another surgery to implant a permanent pacemaker. The device is the same size for adults and babies so, due to limited space near a baby’s heart, the implement is actually in Mae’s belly. It’s a palpable and very concrete reminder of all she has been through. Mae also struggled with pulmonary hypertension, which is high blood pressure in the lungs and can lead to right-sided heart failure. At seven months she had a third heart surgery to repair her mitral and tricuspid valves.
After Mae’s initial 10-week hospitalization she was in and out of the hospital several more times and spent a total of 134 days as an inpatient in the first year of her life. Throughout it all Cristina provided Mae her milk, at first directly at the breast, then through a supplemental nursing system (SNS), and then fortified with formula through a nasogastric (NG) tube. Like many babies with Down syndrome, Mae latched and nursed well right away after birth, actually managing breastfeeding more easily than taking breast milk from a bottle, but she struggled to have enough energy to gain the weight that she needed prior to her first surgery. The NG tube allowed Mae to receive the nutrients she needed without expending the effort that would have been required to nurse or bottle feed.
After Mae’s first heart surgery, at six weeks, she struggled to re-learn how to breastfeed. Her mother worked with lactation consultants in the hospital and outside of the hospital to help Mae relearn the skills she needed to nurse successfully. Mae did better with nursing than with a bottle so Cristina persisted. She describes a particularly emotional weekend where Mae’s medical team approved a trial of breastfeeding only, to see how she would do. It was over Labor Day weekend and Cristina describes it as “an absolute labor of love”. She nursed Mae every 3 hours, around the clock for 3 days. She used something called a supplemental nursing system (SNS), which is essentially a flexible tube taped to your breast with the other end in a small bottle of milk. The idea is that the baby does not have to work as hard to get the milk and it creates a positive feedback loop that encourages them to keep going. Eventually, as they get stronger, they wean off of the SNS and they are just direct nursing. Cristina would pump before she nursed in order to induce let down and she would get rid of her foremilk, leaving the calorie-dense hindmilk for Mae. Unfortunately, after 3 days, she had to admit that Mae was not ready to get all of her calories from direct nursing as she was not able to sustain her weight. The medical team reinserted her NG tube. This was difficult for Cristina to admit but she knew that she had to do what was best for Mae and she believed that Mae would eventually be strong enough. Unlike Aimee and Cate, our previous breastfeeding superstars, Cristina does not have an ah-ha! moment when Mae was suddenly able to nurse. Her journey to nursing exclusively was more subtle. After Mae returned home from the hospital she was breastfeeding and then Cristina would supplement her efforts with fortified breast milk through her NG tube. Gradually, over time, Mae needed less and less supplementation until they were finally able to remove the NG tube and Mae could nurse exclusively.
Cristina nursed her older daughter for a full year and was committed to doing no less than that for Mae. She had the help of several lactation consultants at Boston Children’s Hospital. She also went to a “mommy and me” breastfeeding support group that she had attended when she was breastfeeding her older daughter. This level of continuous support and encouragement helped her feel that she and Mae would eventually be successful. She thinks it is equally as important for any child to breastfeed and sights the bonding time and the antibodies Mae received through her milk as her two most motivating factors. She is proud to have overcome the hurdles that she and Mae faced to develop their breastfeeding relationship and believe that it was worth it for her to persist. Cristina encourages new moms to try breastfeeding their babies with Down syndrome. “It is possible!” she says, “It might require a bit of extra effort, but sometimes breastfeeding does for any child. Don’t give up; seek support if you need it. It is so worth it in the end.”