I gave birth to two children, and I have two very different stories to tell about breastfeeding. Both of my kids have Down syndrome, but their diagnosis doesn’t make them the same. In fact, since the day they were born, they have demonstrated to me just how different they are from each other, despite their fraternal bonds and their shared genetic condition.
One of the most common concerns parents of newborns diagnosed with special needs have is about their ability to nurse. We all know the benefits of breastfeeding, and how important it is. For parents faced with the distress of learning of their child’s disability, breastfeeding should never a forced emotional obligation. Instead, it should be an invitation to embrace motherhood. And, in the case of kids with disabilities, nursing can be our first encounter with challenges that may turn into powerful lessons that provide us with faith and encouragement to lean in to motherhood.
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What I’ve learned about breastfeeding a child with Down syndrome
- Don’t give up. Breastfeeding is not only about feeding their tummies, but their souls. Most kids with Down syndrome present low muscle tone that may interfere with their immediate ability to breastfeed. But that doesn’t mean they will not benefit from feeling mom’s breast and getting motivated to do their best by smelling and recognizing mom’s milk.
- Nursing is not an all or nothing deal. Many times nurses and doctors are against feeding a newborn with a bottle, thinking that after trying the easy way, a baby loses interest in taking the breast. The truth is that this may be a rough time for parents, and Mom doesn’t need more pressure on her if her baby is slow to latch on or a fussy feeder. The emotional connection of nursing your baby at your breast is something that a bottle will never replace—that much is true. But take it easy and do whatever works best for you at this time, even if that means a mix of breastmilk and formula, pumping, what have you. It doesn’t have to be all or nothing.
- Don’t feel guilty if your baby doesn’t want to nurse. Not every baby likes the breast, and not all of them will refuse it just because they have Down syndrome. My son was born with medical complications and really low muscle tone, and even then, he did his best with breastfeeding until he mastered it and kept going until he was 2 years old! My daughter was born healthy with high muscle tone and strong lungs, but never liked my milk. By the age of 6 months, I gave up breastfeeding her. She drank formula like a champ, and stopping early didn’t keep us from becoming connected and enjoying the very special times between mommy and baby.
- Don’t believe everything the doctors say. One of my best pieces of advice for any parent is to not believe all that the experts say just because they have an M.D. or other fancy letters after their name. They know the theories and statistics, but they can’t determine the strength and power that is hidden in love. When my son was born, they told me several times that he wasn’t physically prepared to breastfeed and they asked me to not to feel sad about not being able to nurse him. I believed it was a possibility and I didn’t want to deny us both the opportunity for this loving connection because of a disability. After I insisted, they took him off the oxygen machine and placed him in my arms. The weak baby started nursing right away and after his doses of liquid love, straight from Mommy, he started breathing by himself. That was the first lesson my son taught to me: to never believe someone else just because of his college degrees or experience. I learned my child is unique and he’s the only one who should set limits for himself.
Raising children with special needs makes us stronger in many ways. It teaches us to believe in our kids’ abilities over their disabilities, and also to believe in ourselves and the power of our love for them. It’s exciting to exceed the expectations of others and to be constantly beating prejudices. What we never should do, however, is put unnecessary pressure on ourselves solely to demonstrate to others what our kids can do. The magic starts when we accept and celebrate the unique ways of living and loving while raising a child with special needs.
