Estimated reading time: 7 minutes
Denise Woltering, Virginia, USA
Photo: Maria Griner
I had a pretty busy summer and was feeling quite tired out and uncomfortably pregnant when my water broke four and a half weeks early. Off to the hospital my husband and I went. I wasn’t too concerned because my first child had been almost four weeks early and everything had been fine. When Evangeline was born, my husband and I couldn’t have been more delighted! She was 5lb 2oz, rosy and healthy; now everything would fall into place just as it had done before and we would be discharged from the hospital in a day or so.
I immediately put our daughter to my breast and she started to suckle; it just wasn’t that strong a suckle. That morning, our pediatrician came in and suggested that we might have her looked at for Down syndrome as she seemed a bit floppy. She seemed fine to us. My husband is Asian, so we thought that the doctor may have confused her Asian look with a Down’s look. The neonatologist who checked her out did not seem concerned, so we opted not to have her tested.
Evangeline continued to nurse, but also slept a lot of the time and always needed to be woken up to eat. My other early child had acted similarly. But I did notice that my colostrum was not coming in and the nurse suggested I pump. I had never pumped in my life and this was my fourth birth. I agreed to give it a try because I was becoming a little concerned.
Before discharge from the hospital, nurses and doctors want to see that the baby is taking in adequate sustenance, understandably. That does put pressure on mom and baby to perform. The next 48 hours I pumped and tried to get the tiniest amounts of colostrum into my baby. Within that short period, I became a timekeeper and fluid watcher, noting every amount pumped, bottle-fed, and every diaper change. Nurses kept pricking my little girl’s foot to test her sugar and bilirubin levels. It was pretty upsetting. I put my little girl to my breast at every opportunity.
Two great advancements since my first birth 11 years previously were the helpful lactation nurses who encouraged me to keep trying and came in to check on me often and the promotion of skin-to-skin contact between me and my baby. There was no whisking my little girl off to a nursery. Instead, there was a lot of warm, naked baby nuzzling and sleeping on my chest or her dad’s. I really can’t say enough in favor of it.
After a few days, my baby and I were discharged, but boy, this was quite a different experience. We were going home with a cute, healthy, and sleepy baby who just didn’t seem up to the task of nursing. We toted a heavy but efficient hospital-grade breast pump that became my good friend over the next few months.
I was slightly horrified and constantly worried about bottle-feeding her and whether she would ever truly and exclusively nurse at my breast: I knew about nipple confusion. There is nothing I looked forward to more than that loving and exclusive bond that breastfeeding brings and I felt perhaps it was slipping away. Nonetheless, the primary goal was to feed my baby and help her grow. If pumping 8–10 times in a 24-hour period was what I needed to do, then so be it.
So I found myself in a time cycle of pumping for about 15–20 minutes and feeding for about 45 minutes. This happened around the clock about every three hours or so. To say I was sleep deprived was no exaggeration. Every time before I gave her a bottle, I offered her my breast, and most of the time she would try to suckle a little bit. I slept when I could and continued to try to engage in as much skin-to-skin contact as possible. Sometimes, during the day, I would wrap her little naked body in a Moby close to my chest and put a big t-shirt over so I could continue this stimulation.
When Evangeline was eight days old, I really thought she was getting the hang of breastfeeding. She had regained her birth weight and an ounce or two. I thought, “Okay, she’s got it now. I can chill out and just let her nurse a lot more and bottle-feed less.” Five days later, looking at my oldest daughter’s baby records, I saw that in the first two weeks of life she had gained almost two pounds! Evangeline had gained just a few ounces. My pediatrician’s suggestion that my daughter might have Down syndrome came ringing back in my ears. Why was she so sleepy, why was it a battle to get 30 ccs of breast milk into her little body?
Meanwhile, stressed, I doubled my efforts with the pump and became vigilant anew on keeping track of how much milk she took in. I consulted several lactation consultants. The main information I took from those meetings was to keep working on it. Pump 8–10 times a day, and both sides at the same time. This definitely increased my production. I froze what milk I did not use. I continued to offer the breast and tried a nipple shield, which helped her latch on a bit better. I felt guilty and even ashamed that I couldn’t get her to breastfeed. I obviously had put these feelings on myself and couldn’t shake off my sorrow when I bottle-fed my baby. One consultant eased my feelings a little by saying my daughter just wasn’t ready yet to latch on and to keep pumping and hang in there!
It took several days for me to get up the courage to say to my husband that we might consider having her tested for Down syndrome. This just wasn’t the typical newborn experience and there might be a reason. He felt that she was just young and weak and would come along once she reached her original due date, but he agreed to the blood test. A week later the pediatrician informed me that Evangeline did indeed have Down syndrome. By this point, I felt in my heart that was the case and was not shocked. My husband and I went through a grieving process at this point. What worried me most was the fear that my baby might be sick, though she seemed healthy and thankfully had no indication of a congenital heart defect, for which children with Down syndrome are at a higher risk.
With the diagnosis, I began to search the Internet for articles about breastfeeding a baby with Down syndrome for helpful ideas. I saw more lactation consultants and spoke to La Leche League Leaders. Everyone was encouraging and reminded me that feeding the baby was our first priority. The greatest help came from my husband and a friend of mine with a beautiful daughter with Down syndrome, whom she had breastfed for two years. She followed up with me, sent me articles, and kept telling me to keep working on it as breastfeeding was the best and healthiest gift I could give my child. And so I kept on pumping and offering her the breast.
There was a time when I weighed her every day, nervous about the gain: doctors kept telling me that she needed to gain half an ounce to an ounce each day. It was slow, but it happened. We lived through two very intense months. I thought there was no way she would ever breastfeed exclusively. Though this saddened me, I felt glad that she would at least suckle and that we would bond in that way. I decided to pump for a year, no matter the inconvenience to give her my best. Evangeline had greater success nursing at night than during the day, as though instinct kicked in then. There would be no baby sleeping through the night at ten weeks! I also tried the Supplemental Nursing System several times. I know some people have great success with it, but it never worked for me.
I have four other children and homeschool them. We worked our schedule around pumping, nursing, and feeding times. We went out to activities and always made sure a smaller pump and bottle of milk were in the car. At this point, I pumped twice at night for about 20 minutes and about four times during the day.
I’ll never forget that Tuesday before Thanksgiving, when Evangeline was four months old. We weighed her and I sat down to nurse. The consultant said, “You know, I really think she is getting it. Her mouth motions look great!” After she finished, we weighed her and she had taken in an ounce on her own! This was a moment of real elation on my part: we were making progress.
After that, Evangeline took more on her own every day. I continued to pump until January, gradually decreasing the number of times a day. At six months old, Evangeline was exclusively breastfeeding! At 18 months, she is happy and still nursing with enthusiasm. She has never had to be hospitalized and has never been seriously ill. I am grateful to God for that and believe that breast milk has played an important role in her health.
If you have a baby with Down syndrome who is weak at first, you can breastfeed. Keep trying! Rent a good hospital-grade pump. Keep offering the breast and make sure your baby gets the milk she needs. You won’t regret it.
Family Voices, a U.S., nonprofit, family-led organization promoting quality health care for all children and youth, particularly those with special health care needs. Family Voices provides support for the 51 Family-to-Family Health Information Centers (F2F HICs) located in each U.S. state and Washington, D.C. F2F HICs are family-staffed organizations that assist families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. F2F HICs provide support, information, resources, and training around health issues. Find the F2F HIC in your state here.