Choking and Down syndrome

The first positive experience I had with hospital staff after we found out Cooper might have Down syndrome was with the lactation consultant they sent into our room. She was older and carried a very calm presence. Immediately, I felt safe with her in the room. She came in, introduced herself, sat at my bedside, and swiftly started helping me try to get Cooper to latch. I could tell she had been doing this a long time by how quickly she worked, but at the same time, she was very patient. She told me about keeping my baby's chin on the breast so his mouth could get into the right position. She had me try the cradle hold, then the football hold, then just let him rest on my chest because she said he seemed tired. Her hands and her voice moved gently all the while as she tried to help feed my new baby, but it was like lightning speed to me. All my mind could think about was whether or not my baby had Down syndrome.

I tried listening and understanding what she was saying, but I couldn't focus. I wondered if she knew about the suspected diagnosis. She hadn't mentioned it at all. Can she see it? Did someone tell her? Is she ignoring the fact that he could have Down syndrome?

After a while, I couldn't stand it anymore. I didn't know a thing about Down syndrome, and I figured she'd had to have experience with babies who have it. "I have a question," I began. My voice cracked. I hadn't said out loud to anyone yet that our baby might have Down syndrome.

"Does any of this change if he has Down syndrome?" Just saying Down syndrome felt so foreign to me. "They... they think he might have it," I stammered.

Her swift moving voice and hands finally came to a stop, and she looked me dead in the face. I was holding back tears, trying to seem put together for this stranger while sitting in a hospital bed in a hospital gown recovering from birth with my chest totally exposed.

Her face softened and she said, "Oh, really?" She moved in close to study Cooper's face. I could feel my face and skin flush. Oh my gosh, I said it out loud. My husband sat in the corner of the room. I wondered if he heard my conversation with this lady. If he saw me trying not to cry.

"Huh," she said after a moment. "Well, if he does have it, nothing changes. It might take him a little longer to get the hang of breastfeeding, but he absolutely can do it." I hadn't expected such a postive response. Everyone else at the hospital danced around the subject of Down syndrome, as if a confirmed diagnosis would be the end of the world. But this lady didn't dance around it. My heart felt so much lighter just hearing someone tell me that my child, if he did have this surprise diagnosis, could do something as ordinary as breastfeeding.

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A few months into our journey with Cooper, I heard about feeding issues in babies with Down syndrome. One big potential hurdle was swallowing issues because of low muscle tone and decreased oral sensation, which can lead to aspiration and/or choking. That same low muscle tone can make nursing so hard for a new baby with Down syndrome. Another potential hurdle was sensory issues which can lead to extremely picky eating. And I kept hearing about a large tongue that would just make everything more complicated. (I have since learned that the tongue is not necessarily the issue, but I'll save that for my writing on speech. And I would note here just how intrinsically related speed and feeding are...)

According to https://www.feeding.com/post/feeding-in-infants-and-children-with-down-syndrome, infants and children with Down syndrome are at greater risk for silent aspiration."Silent aspiration occurs when food or liquids enter the airway and a cough is not stimulated. A cough is very important as it is the body’s way to “cough out” or remove the food or liquid from the airway. A cough provides protection for the airway. In a study of 19 children with Down syndrome under the age of 4 years, silent aspiration was identified during a modified barium swallow study (a very specialized study of swallowing) in 10 of the 19 children studied. Complications of aspiration include respiratory illness, congestion and pneumonia. When you have a population that is already at risk for respiratory illness and feeding problems, it is vitally important to have feeding and swallowing skills thoroughly evaluated."

My fear of Cooper not gaining weight and progressing held me back from being persistent with breastfeeding when he was a newborn. Instead, I chose to pump breastmilk and bottle feed him. For 10 months, I pumped and bottle fed. This was not new to me. I did the same for my first child. At 11 months, Cooper drank the freezer supply of breastmilk for a month, and then for another month or so he drank formula (Bobbie brand). Around 14 months I switched him full time to raw cow's milk. He drank that for about 6 months before we stopped offering milk altogether. This was partly because my source for raw milk was inconsistent, and partly because I had gotten pregnant and stopped purchasing raw milk products. (Some circles say dairy and gluten are hard on our kiddos with DS. For Cooper, I choose to limit dairy because it can further complicate congestion, which a kid with DS is prone to struggle with because of their smaller airways and low tone, as mentioned above.)

Around 10 months, we introduced a straw cup (the bear cup) at the recommendation of our occupational therapist. The OT had said it might take Cooper a long time to figure out how to use it. But, within a month he had learned to drink from the straw and suck from a puree pouch. I asked her to watch him and see if she noticed any signs of struggles, especially aspiration. She didn't see anything. His feeding really took off from there.

Today, at two-and-a-half years old, he can put down so much food. It's shocking. He easily outeats his eight year old sister. We are so thankful that feeding has not been as issue for him. But even without aspiration, even without food aversions, there are still things we have to be careful about because of Cooper's differences with oral sensation. We have to monitor the size and texture of the foods he's given. On more than one occasion, he's been handed a chunk of banana or bread, tried stuffing the whole thing in his mouth, it gets stuck in his high palate and small throat, and he's been unable to clear it on his own. Just two weeks ago, I was on the phone while Cooper sat in the high chair with a piece of banana. I looked over and saw him struggling, a clear panic in his eyes. I had to tell the person on the phone that Cooper was choking and intervene. It's terrifying for everyone involved when it happens. The kind of terrifying that leaves your skin sweaty and your heart rate high. For bananas and breads, small pieces are best for him. Other foods with slippery textures also have to be small, especially oranges, because he tends to not chew them at all.

Problems with swallowing are known as dysphagia, and this is more than 6 times more common in people with Down syndrome, according to Advocate Medical Group (https://adscresources.advocatehealth.com/swallowing-issues/). This can cause a host of other issues if not addressed and corrected. See the above webpage for more detailed explanations of dysphagia and how to mitigate it. There's even a video you can show your loved one with Down syndrome to help them visualize and understand chewing (https://adscresources.advocatehealth.com/healthy-pace-for-eating-video/).

These challenges can make leaving Cooper in someone else's care difficult. We have left him on a couple occasions with family members, and both times I've meticulously planned and packed food just for him, with specific instructions to never leave him unattended with food. But, we know he will learn to eat safely with time, just like he learns everything else.

And, as always, the main thing to highlight here at the end of this writing is that his differences in feeding do not make his life less worth living. We all have challenges in one area or another. And there are literal professions dedicated to helping people overcome feeding challenges. Speech therapists are trained in this stuff, as well as feeding specialists and some doctors. And don't forget about parents and other people with Down syndrome who have been down this road. In my opinion, learning from other families is the best way to gather information and help you feel less lonely in whatever may be on your mind.

Thanks for reading and being a part of our journey. I hope each thing I take time to write is helpful, not only for other families in the Down syndrome community, but for those outside the community that may not know much about Down syndrome and have desire to learn. We love you!