It’s my favorite time of the year! No, it’s not Christmas or March Madness, though those are a close second and third. February 10th to 14th is the 10th annual Feeding Tube Awareness Week, the week where families who love a baby, child, or adult with a feeding tube get to share their unique experiences with their communities and hopefully get a little extra special care.
Children need feeding tubes for a variety of reasons; infants who are born too early, too small or, too sick to eat must rely on a tube to get their nutrition and help them grow. As adults, we take the ability to eat for granted and don’t realize that babies aren’t born with an innate knowledge of how to eat. We overlook how difficult it is for a newborn baby to learn to eat. For infants, eating takes a lot of work, coordination, and energy. Babies who are born prematurely or with a medical condition have to spend all of their energy on keeping their heart beating, continuing to breathe, keeping their body temperature steady, and so on; they don’t have any extra energy to do all the work of learning how to eat. This is where the life-saving feeding tube enters the picture.
Another thing we may not realize is that humans have a narrow window of time where our anatomy and physiology are ready to learn how to eat. Those newborn cheeks aren’t just adorable; they are incredibly helpful in directing formula or breastmilk to the right place for swallowing. Additionally, if you could view the inside a newborn’s mouth and throat, you would see key differences that protect the child’s airway and promote healthy eating. Newborn reflexes also play a huge role in learning how to be a champion eater. Think of the baby that will suck on anything you put in its mouth. Sucking is just one of the many newborn reflexes that give healthy newborns a head start in learning to eat.
But what if an infant relies on a feeding tube during that critical window of development and hasn’t learned how to eat by mouth when their reflexes and anatomy were ‘just right’? Now learning to eat is much more difficult and often requires the help of a feeding therapist (most commonly a speech pathologist or occupational therapist with specialized training in feeding therapy). Now learning to eat takes longer and effort. In many cases, it can take years. For many children who are still struggling with on-going medical issues, a feeding tube may be a permanent necessity.
Many parents of children with feeding tubes feel a very deep sadness that their child is different or that they aren’t able to shower them with the love of a home-cooked meal or special birthday cake. But there is so much they can do, and this week is about celebrating the children we love who have feeding tubes and offering a little extra love and care.
Two ways to support someone you love whose child has a feeding tube.
- Parents whose child has a feeding tube may feel embarrassed or uncomfortable feeding their child in front of others. Invite your friend and their child to come over for a playdate and specify, “we’re going to have a snack, and you are welcome to feed your child at our house any time. Is there anything specific you would need to feed him at our house?” Also, keep in mind that some kids with feeding tubes require so much extra equipment that eating at a friend’s house may be too cumbersome and offer to go to their home for the playdate instead. Feeling comfortable and supported in how we feed our kids is empowering for any parent.
- When your child uses a tube to eat, it can be incredibly difficult to find a babysitter or even just a friend who can watch your child. One of my favorite parts of getting a babysitter is getting a break from having to feed my kids for the zillionth time that day. But imagine if you were THE ONLY PERSON who could feed your child and you never got a break from that responsibility. Offer to learn how to give the tube feedings so that Mom or Dad can get a much-needed break or even just have the peace of mind that in an emergency situation, someone could watch the child AND feed them.
Want to learn more? Check out https://www.feedingtubeawarenessweek.org