Breastfeeding My Baby with Down Syndrome
Carlow Republic of Ireland
From NEW BEGINNINGS, Vol. 25, No. 2, 2008, pp. 24-26
My first experience of breastfeeding was not what I had hoped it would be. As a children's nurse who had assisted many mothers in their breastfeeding journey, I was optimistic about my ability to breastfeed successfully. I was also guilty of smugly assuming that I would have no difficulties in dealing with my own small baby as I had looked after so many in the past.
My beautiful firstborn daughter, Emily, put an end to all of that! From the moment she was born, she had very definite ideas about where she wanted to spend her time -- and that was in my arms suckling at my breast. If I dared to place her elsewhere for a moment, all hell broke loose. I spent the first eight weeks of her life in a sleepless blur. I couldn't get comfortable feeding her while lying down and I was worried as she was constantly irritable and not gaining weight in any significant amount. My nipples were sore and bleeding and I seemed to be crying all the time. At that time, I did not know how to access my local La Leche League Leaders and felt quite a failure as far as breastfeeding went. I eventually resorted to formula-feeding my daughter and the guilt was assuaged by the relief of finally getting some sleep.
Two years later, my second beautiful daughter, Abigail, was born. I was wiser in the ways of parenting and had learned to be more relaxed and philosophical this time around. Nevertheless, I was quite overwhelmed when I first looked at my precious child and realized that she had Down Syndrome. I remember wondering, among many other garbled thoughts, if I would ever successfully breastfeed a child of mine. After all, babies with Down Syndrome cannot breastfeed successfully, can they?
This was the beginning of a journey that would last over two years. The experience showed me without a doubt that babies with Down Syndrome definitely can breastfeed. However, my experience was that my daughter did need a little bit of extra practice and assistance in the early days.
Latching on to my breast was tricky for my small girl. Once she was latched on, she had a strong suck, but she tended to let go of the nipple very easily and then I struggled all over again to get her latched back on. In the early weeks, it could take as long as 45 minutes to latch her on in a position that enabled her to have a decent feed. If I had not already breastfed a baby, I am not sure if I would have had the strength to keep trying. I was heartened by the support I received from all of the midwives in the hospital. Without putting on any pressure, they reinforced my knowledge about the good this could do my child in terms of her immunity, nutrition, and muscle tone (babies with Down Syndrome typically have low muscle tone). I can still hear the physiotherapist at our first session telling me that it was the best speech therapy I could give her! What a motivation!
I eventually discovered a hold that suited both of us to get Abigail latched on. I held the back of her head with my left hand, and moved her toward my left breast. My right hand either supported her wiggly little bottom, or sometimes also my left breast. When she finished on the left side, I did the same on the right side. My hold meant that we looked rather awkward together. Both of my elbows stuck out and if I did not have another person to help me to arrange pillows under her, my shoulders got quite stiff and sore. However, by holding her firmly this way, she did not slip off my breast and fed quite happily. By the time she was five months old, her muscle tone was stronger and I was able to hold her in a more conventional way. Interestingly, I never had a sore or cracked nipple while I fed her.
Another challenge lay in her weight gain, or the lack of it. I did spend time anxiously wondering if I might have inferior quality milk because neither of my girls gained much weight in their early weeks. However, I was blessed with support from wonderful LLL Leaders and also my sensible public health nurse (PHN) who pointed out that Abigail was happy and content, slept well (what a luxury after my first baby!), and she had plenty of wet diapers. As far as dirty diapers went, I often had to wait for six or seven days. I was quite concerned about this, as babies with Down Syndrome are more susceptible to a range of intestinal difficulties. I feared that we were heading into a chronic constipation scenario, but after discussing the situation with my LLL Leaders and PHN and reading THE WOMANLY ART OF BREASTFEEDING, I relaxed a bit more. Some babies, it seems, produce minimal waste from breastfeeding with no ill effects. At around six months old, Abigail started pureed fruit and vegetables and lack of bowel movements became a worry of the past!
At the time I was considering returning to work, and my husband and I decided to introduce a bottle. I was not managing to express much milk, so we decided that Abigail should have formula in the day time and breastfeeds from me in the morning and evening. Abigail, however, had other ideas. She took a bottle from us on two occasions, but ferociously vomited the contents and needed an afternoon of breastfeeding to settle her back to normal. On the third occasion, I managed to express enough milk to put into a bottle, but by then, she decided she didn't care much for bottles and turned her little button nose up at it. It was breast or nothing!
She wasn't particularly wild about cups either and so, when I returned to work, I fed her in the morning before I left and my husband added my expressed milk to all of her meals during the day. She also ate lots of goats' milk yogurt but drank nothing until I came home in the evening. Luckily, I was job sharing so she did not have to do this every day. We bought every cup on the market until we arrived at one that she learned to drink from. Another hurdle overcome!
When we celebrated Abigail's first birthday, I felt quite overwhelmed that I was still breastfeeding her. I was a woman who could not manage to feed her first baby beyond eight weeks. Along the way, I had learned to release that guilt and let it go. Having listened to countless other mothers, I have come to realize that there is no "typical" breastfeeding story. Everybody's experience is unique. I did the best I could with my firstborn and am grateful that I managed to feed her for eight weeks. Equally, I did the best I could for my second born and I eventually weaned her at two years and three months. Over her second year of life, we dwindled down to one breastfeed at night. One night I needed to go to a meeting so my husband read her lots of stories and put her to bed without a feed. She chatted for an hour quite happily in her crib and fell asleep. And that was that. I felt no sorrow at the end of this part of her life. We had weaned so slowly and gradually that I know that she was ready to move on to her next stage of development and so was I.
When parents of any child discover that their child has a disability, they go through a grieving process that can last for days, weeks, months, or years. This is often accompanied by a sense of helplessness and a belief that all control over the situation is lost. In my personal circumstances, breastfeeding my child who had a disability helped me to work my way through this process. I still grieved -- and still do grieve -- for the loss of the child I thought I was going to have. But learning how to feed her and being so intimately close with her for her first two years was a huge help in teaching me to accept what I could not change and in thinking positively about the rest. I also do believe with all of my heart that breastfeeding assisted her in terms of strengthening the muscle tone of her lips and jaw, as well as providing her with essential nutrients that have helped her to grow physically and intellectually. Like all mothers, I believe that both of my girls are the prettiest and the cleverest in the world!
I did not manage to attend many LLL meetings, but I'm grateful for the support that came from all of the women I met through LLL in Carlow, Ireland. They encouraged and helped me on my way. And most importantly of all, they accepted Abigail and me at a time when I had not fully accepted her myself. Our relationship is stronger because of it and for that I will always be grateful.