Breastfeeding a Baby With Down Syndrome
Our story this week comes from Jenna. After successfully nursing her three boys, the journey that her daughter brought was anything but “normal”. Nursing a daughter with Down Syndrome was nothing short of difficult and came with many challenges along the way.
I had the joy and blessing of breastfeeding my first three children (all boys) through many, many challenges (recurrent mastitis and plugged ducts, reflux, poor weight gain, undiagnosed tongue tie, etc.) until they were each about two years old. Once I became a mom, breastfeeding quickly became something really important to me, even though it was often incredibly hard. I loved being able to nurse each of them and the precious bond it gave us. After many years of dirt, trucks, and frogs, I became pregnant with a girl, and it was quite literally a dream come true. My pregnancy with her was the hardest but I was so very excited to meet her and to continue my breastfeeding journey with this girl I had dreamed about and prayed for for more than adecade. What I did not expect or plan for was Jovey’s post birth diagnosis of Down Syndrome or the huge hole she had in her tiny heart. Despite many ultrasounds, both of these diagnoses were a complete surprise and shock to us. Grief was overwhelming in those early days. She was not able to nurse at all at first, and when we learned about her Down Syndrome, my first question to the nurse was, “Will I be able to breastfeed?”. Lactation consultants were so kind and supportive, and by the time we left the hospital, Jovey was nursing well! It was a miracle to me, the greatest gift and mercy during such a hard time. However, because of the hole in her heart, she slept about 23 hours a day for the first many weeks. I tried absolutely everything to wake her up, but nothing worked. She was not gaining nearly enough weight because her poor body was using every calorie she consumed to keep her alive. She needed open heart surgery but they wanted to wait until she weighed 5 kilograms (about 11 pounds), which seemed impossible.
Eventually, because she refused bottles of any kind, her developmental pediatrician decided she had to have an NG tube to give her the calories she needed. At the hospital where the procedure was done, I was told I could no longer breastfeed. I was shattered. It was a worse and more intense grief than even her surprise birth diagnosis had been. I did not stop crying for days and the depression I went through was deep. Eventually I came to decide that I would still continue to nurse because I so strongly believed that it was what was best for Jovey. After a few weeks, though, she stopped nursing completely because it was just too much work for her exhausted body. I held on to the very remote hope that she would be able to nurse again after her surgery, which was moved up several months after she stopped gaining weight even with the NG tube. In the hospital, I told every doctor, nurse, therapist, and lactation consultant I could about my desire to nurse again. After a horrible post-surgery experience (Jovey stopped breathing in my arms and had cardiac arrest after they removed her chest drainage tube) and a long eight days in the hospital, we went home with less hope, as she still had not shown any signs of being interested in nursing or bottle feeding. By this point she had had the NG tube for almost 5 months. Relactation was a very remote possibility. I reached out to local lactation consultants and speech therapists, and they tried to help me for a while but they all eventually told me, albeit gently and sympathetically, that Jovey was not going to return to breastfeeding after this much time of not doing it, on top of her long list of medical complexities. I never stopped praying and I never lost hope in Jovey’s strength and my belief that she COULD return to nursing because she had done it so well before, but my dream was all but dead. I focused on bottle feeding and weaning her off the tube even if that meant I could not breastfeed again.
Eventually, Jovey accepted bottles and (VERY) slowly was able to take her complete daily volume by bottle. It was a HUGE celebration when I removed that feeding tube for the last time! I was so grateful for the endless support of friends and other moms who had shared wisdom and encouragement and upheld me with their prayers. Shortly after Jovey was weaned from the tube, a friend casually asked if I had tried nursing her recently and I told her I had not, that I had finally accepted that it wasn’t to be. She suggested I try again. I did that same day and Jovey latched for the first time in months!!! It was a miracle. I was stunned. After that, the rest is history. Jovey relearned how to nurse and built up her endurance until I did not have to bottle feed her at all. She’s now 18 months old and still nursing many times a day. There are no words to express my gratitude for our breastfeeding relationship. It has been the most beautiful gift to both of us and has bonded our hearts together like nothing else ever could.
