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A Mother’s Perspective: Bonding With Your Tube Fed Child

Registered Dietitian Nutritionist
07/21/20  4:50 PM PST
Tube Fed Child

Julie Bombacino, CEO and co-founder of Real Food Blends, discovered her passion and new career path after learning her child needed a gastrostomy tube. While working through the initial shock and becoming acclimated to their new way of feeding, Julie learned a lot about bonding with her son and how to help others through a similar journey.

“At first I was shell-shocked! AJ had been nursing for 6 months and I never knew that epilepsy could lead to needing a feeding tube. (I think I was like much of the general population who believe that feeding tube = having something wrong with your digestive system.) We were in survival mode those first few months. It wasn’t until we had been living with the tube for a bit of time that I was able to acknowledge how sad I was about it, about not being able to share the joy of mealtimes and first foods, etc. with my son.”

Being both a mother of a child with a feeding tube and a professional in the food business has given Julie a unique perspective. She shares her advice for parents, in addition to ways others can help a family of a tube-fed child.

Advice for Parents:

It is still possible to bond with your child while tube feeding. Talking to, humming or singing while your baby eats can comfort your child just as it would if you were bottle or breast feeding. You can also connect with your child by holding their hand and looking directing into their eyes.

Something that was especially helpful for Julie’s family was to bring a highchair or a baby rocker to the kitchen table. It’s important to include your child during mealtimes because it strengthens your bond and encourages a positive family dynamic. A great perspective is to emphasize that the formula is going into the baby’s tummy (not tube) and that it’s a loving process. Initially this will be a trial and error period to find out what works best for your family.

Julie also encourages families to consider joining a feeding tube support group. It’s a great opportunity to connect and share ideas from fellow parents/caregivers who also care for a tube-fed child.

Advice for Understanding Parents of a Tube-Fed Child:

Whether you are a professional, family friend, or distant relative it is important to recognize and acknowledge the feeling of parents of tube-fed children. To aid their family bonding, be supportive and reassure them that their feelings are valid and normal. Julie says that grief, depression, and PTSD are common especially during mealtimes and holidays. There is no “magic pill” to make these feelings go away. There will be some grief associated with learning that your child needs to be tube fed, whether it’s short term or long term.

Be sensitive. It’s how we say things! Don’t add more guilt or put more work on them because they’re feeling very overwhelmed. It’s important to be sensitive. Try changing the language not to include words such as “feeds” or “administer.” And rephrase to “giving their baby formula” or “giving their young child food”. It’s impactful to be cognizant of what we say and how we are saying it. Ask them how they’re doing and offer to help them. You can start by truly listening to their expressed needs and anxieties. This will reassure them and ease their anxiety around bonding with their child.

DISCLAIMER: This information is designed for customer use only and does not represent the advice of a medical health professional. Please contact your doctor for explicit advice on your prescription and/or feeding program.

 

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