This is the second in an ongoing series of breastfeeding superstars featured in our photo and video to promote breastfeeding among children with Down syndrome.
The first thing you notice when meeting this week’s breastfeeding superstar is how delightfully expressive she is. Looking through the photos from our shoot you can tell exactly what she’s thinking and she had us all laughing with her transparency! Meet Harper, and her mom, Michele, the second in our breastfeeding superstars series.
Harper was born three weeks early with Down syndrome, a complete AV canal defect, and transient myeloproliferative disorder (TMD), which is a condition found only in newborns with Down syndrome. TMD is a form of leukemia that usually spontaneously resolves but requires treatment in about 20% of cases. It can be fatal if intervention is not successful. Harper has been monitored monthly since birth to ensure that her TMD has not transitioned into leukemia and we celebrate because last week we found out that she now only has to have her blood checked twice a year!
Harper, who turned one in June, is the middle child in our “three of hearts” series, and was in the hospital for the first 10 weeks of her life. Even though Harper had a latched well from day one she had difficulty sustaining her breastfeeding sessions because of her weak heart. The doctors were concerned that she was not getting enough volume and calories so they suggested she switch to fortified breast milk. She was eventually diagnosed with failure to thrive because she was unable to gain the weight required to keep her healthy and even the act of suckling from a bottle was too taxing. Due to her lack of weight gain, her worsening heart failure, and her need to rapidly get strong enough for her heart repair surgery, Harper’s medical team placed a nasogastric (NG) feeding tube. Throughout her time in the hospital Michele continued to put Harper to the breast but also pumped milk that the nurses could feed to Harper through her NG tube.
Even though Michele’s obstetrician warned her that she should accept the fact that Harper she would need special feedings, bottles, and possibly tube feeds, Michele was determined to breastfeed her anyway. In one respect, Michele’s OB was correct, Harper did need all of those things in the beginning of her life but that’s not where the story ended. Due to Michele’s experience nursing her other children, the support of the nurses on the pediatric floor, and her dedication, Harper was eventually able to directly nurse at the breast and is a champion nurser a year later.
Michele relays the story of being told by her genetics counselor that her baby would likely never eat or drink like a “normal child”. Understandably, Michele cried for hours and left his office with a deep fear that she would not be able to nurse Harper. She struggled with her baby’s diagnoses of Down syndrome in the beginning and felt like a failure for not being able to have a healthy child. She was terribly afraid of losing Harper to her heart issues or to her TMD and she found it very difficult to bond with her baby at first. Thankfully, despite her worry and her negative early experiences with her medical professionals she remained committed to breastfeeding and found allies in Harper’s. They encouraged her by telling her that the babies with Down syndrome were often some of the best babies that they’d had in terms of breastfeeding. She says the nurses encouraged her and helped her feel as though providing her milk was critical to ensuring Harper the best start in life. As she nursed Harper she got into the familiar pattern of providing nourishment for her baby and started to bond with her like she did with her other children.
Michele and Harper left the hospital soon after her heart repair and Michele continued to pump and feed her through her feeding tube while bringing her to the breast to help her continue to develop those skills. Harper had her NG tube removed in mid-September and she has been strictly on oral feeds since then and nurses at the breast just like Michele’s other children did.
Michele admits that their road was a bit difficult and complicated but says that, for her, seeing Harper nurse successfully after trying for so long has given her the confidence that her baby can do anything she sets her mind to. She has this advice for moms who would like to breastfeed their babies but are afraid that they won’t be able to do it, “Do it! Get help if you need it, talk to other moms who have had positive experiences.”