This is a personal account by Dee Cole from Saskatoon Saskatchewan Canada about her breastfeeding experience with her down syndrome baby and the importance of having peer support from other mothers.

Picture of baby with down syndrome
I had a beautiful pregnancy and did not work for the last five months of my pregnancy. I had never felt so healthy in my life and even registered for prenatal and exercise classes and read many books on pregnancy and childbirth. The only thing I didn’t do was attend La Leche League meetings—I did not know they existed. If I had known I would have attended all I could.


June 1, 1996, was when it all began. At midnight my water broke (three weeks early) and my doctor told me to go to the hospital, which I did at 3am when the contractions started. After an hour of admissions procedures including an examination of my cervix, it was announced that my baby was a footling breech. Within seconds I had numerous nurses surrounding me, administering drugs, and starting an intravenous line. Before I knew it, I was in a wheelchair on my way to surgery.


I had prepared for a natural, active birth. My husband was ready to be my coach, advocate, and protector. We were going to do this together. Suddenly all power was taken away from us and we were undergoing an emergency cesarean birth. My husband and I felt helpless.


At 6am my daughter, Alexandra, was born. She needed resuscitation and had quite a distorted head shape (probably due to the way she was lying in the uterus). It was quite a while before she was brought to me. My husband, Rob, was hesitant to go to her and insisted he would stay by my side. The room was quiet and I felt very sick. Finally they brought a wrapped baby over to me. She was my baby, but I felt indifferent to her. I was in shock—a baby three weeks early and born three hours after I was admitted to the hospital with minor contractions. I presumed Rob was also in shock.


In recovery about half an hour later the staff handed Alexandra to my husband and he immediately brought her over to me. I took one look at her and asked him what he thought was wrong with her. He looked at me and suggested Down Syndrome to which I immediately agreed. We turned to our doctor and asked her if she suspected the same. She nodded, but was not certain. We would have to wait until Monday to find out for sure with tests. It was only Saturday morning.

Rob and I had always thought that breastfeeding was the only option for feeding our baby. I offered Alexandra my breast as soon as I could. She was very sleepy and would not open her mouth. Every three hours she was presented to me to breastfeed, but every three hours she did not breastfeed. The lactation consultant was off duty until Tuesday, but by Monday a considerate nurse suggested finger-feeding her (feeding via a supplemental nursing system with the tube taped to a finger). I had already begun pumping Saturday night. Incidentally, during the weekend my husband was told that she would never latch on and we might as well bottle-feed her now and save everyone some time! We did not. I pumped.


Monday came with diagnosis of Down Syndrome

Monday came and there was a definite diagnosis of Down Syndrome. She also had a congenital heart defect, which occurs in 40% of babies with Down Syndrome. The heart defect was very severe and she would need open heart surgery before she was one year old.


For seven weeks I pumped every three hours, day and night, and Rob and I finger-fed Alexandra. We are very proud to say that she did not have a bottle once. At six weeks my resolve was low and I was ready to quit. It felt as if she was never going to latch on.


While attending the Saskatoon Exhibition that week, I came across a small area sponsored by the Saskatoon Chapter of La Leche League that provided nursing mothers a private and comfortable place to nurse their babies. I was pleased to find a quiet, private place due to the paraphernalia I needed to use for finger feeding.


So I picked up a meeting notice and a copy of NEW BEGINNINGS from the display and discovered just what I needed. I needed support. All I wanted in the world was for my baby to nurse. Everything else had gone wrong and I just wanted this one thing to go right. It did not seem to be too much to ask. I attended a meeting and found the support I needed from the Leader, June. She came to my house almost every day and spent hours helping Alexandra learn to latch on. One day she latched on a few times, but then quit, much to my devastation. We went back to finger-feeding.


Heart failure at 7 weeks

At seven weeks, my daughter went into heart failure and was admitted to the hospital. She underwent open-heart surgery and had many complications. I could do nothing to help her besides pumping my milk for her to have when she was able. She was in the pediatric intensive care unit for 14 days. June visited me every day. When Alexandra finally came off the ventilator and started getting fed breast milk through a tube, the heart surgeon suggested nursing her. I didn’t bother explaining our previous problems to everyone, so we tried. She latched on for 45 minutes and fell fast asleep at my breast. I cried.

She continued to nurse. She was fed supplemental formula through a tube, but I insisted (with June’s support) on no bottles. So there we were breastfeeding with oxygen tubes, nasogastric tubes, catheters, IVs, and monitors. It was a miracle.

Alexandra is now 11 months old and nursing beautifully. The pump is gone and everything is as natural as nursing a baby should be.


My Inspiration

I got my inspiration to get through those last few weeks from La Leche League, from June, and from those mothers who offered moral support. My husband was a great support. He agreed with and supported me and my decisions during those first very trying weeks. My mother was also a support, urging me to continue pumping when the professionals were doubtful that my daughter would ever breastfeed correctly. I wanted everyone to say, “Keep going, she will latch on eventually,” but of course they could not guarantee that. Nobody could.


I now nurse on demand, throughout the night, when and where Alexandra wants to and I am proud to do so. June and the other women at LLL meetings look at me when I nurse her and smile. But nobody smiles like I do! I hope other mothers who have babies with special needs will persevere the way my family did. The rewards breastfeeding brings are worthwhile for all babies, but are needed desperately by babies like Alexandra.


Nobody smiles like I do was first printed in LLL NEW BEGINNINGS, Vol. 15 No. 4, July – August 1998, p. 105. It can be accessed online at

For local breastfeeding resources, go to  the World Alliance for Breastfeeding Action (WABA) at


Challenges Magazine Vol1 Issue4, 2008  (Challenges Magazine is a journalism skills training project for persons with disabilities started in 2007)