Reading the Family and Friend Guide is a great way to support your loved ones who are tube feeding their child. Download the Guide here.
Dear Friends and Family,
We want you to understand a little more about what it is like to have a child who is tube fed. Because often, it means so much more than our child eats differently than other children. Nearly all children with feeding tubes have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments, and generally not being able to interact with their environment like other children do.
Moreover, children with feeding tubes often have a tube because of complex medical issues. The irony is that many children with feeding tubes do not look sick. Many conditions that can require tube feeding aren’t things you can see. See our condition list. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.
Many of us have experienced negativity, inappropriate comments and poor behavior from strangers.
And most importantly, to keep our kids nourished, it is all worth it.
Here are some things we would like you to know about our children and us as parents. Click each one for additional information.
Many children on feeding tubes are entitled to certain services due to their medical conditions. Please don’t think we are milking the system or are lazy.
Specialized formulas can be incredibly expensive and may only be available through Medicaid or WIC. These days, many insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more.
On top of that, there are copays for doctors, ER visits/hospital stays, and other medical supplies. Some medical supplies aren’t covered by insurance at all. Home nursing care may be needed, and that is rarely covered by insurance. Sometimes the only way to get a child’s needs met is through Medicaid or a disability-based Medicaid waiver.
Moreover, many families have to have at least one parent home at all times to provide specialized care. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. Money can be tight.
Families may not realize how stressed parents of children with feeding tubes are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child with a new condition appearing every few months, you can feel like you have post traumatic stress…you are just waiting for something else to go wrong.
People are curious, and some of them were born without filters. Strangers sometimes say stupid things without thinking. We learn to deal with that, as all parents have to at some point. Even more difficult than thoughtless comments from strangers though, are thoughtless comments from friends and family, whether or not they are intended to be that way. Here are some things that you need to know if you have a friend or family member with a feeding tube:
1. We are struggling to accept the tube ourselves. As such, we appreciate support in reaching a point of acceptance rather than reinforcement of the negative feelings towards the tube that we are trying hard to move past. Understand that the tube is not the enemy, and it is not the worst thing that could happen to your loved one. If you have a loved one who has a feeding tube, learn to love their tube because without it, you may not have your loved one in your life anymore.
2. Learn to be comfortable with the feeding tube, even if you’re not. Don’t be afraid to hold or play with the child. Caring for a child with medical complexities is stressful, and parents need a break every now and then, but finding babysitters is difficult. Be willing to learn about the child’s medical conditions, how to care for the tube, how to administer feedings, and what to do in emergencies. If you’re not comfortable doing it alone, find another friend or family member to help you. A couple of hours out of the house alone together can do wonders for the parents, even if they spend it at the grocery store.
3. Please, please, please do not criticize the decisions we make in our children’s medical care. We are not doctors, and we are doing the best we can with the information we have. If you do not understand why we have decided to go ahead with a surgery, medication, or treatment option, use your very best manners and ask, but do it in the spirit of coming to understand the decision and not to argue with it. Criticism only makes us feel worse about an already difficult situation.
4. Respect our wishes when it comes to the care of our children, no matter how silly the request may sound to you. For the safety of the child, listen to what we tell you and don’t stray from it no matter what you think the outcome may be.
5. Be patient with us. Our lives are in upheaval, and once we make it past the upheaval stage, we have a lot of upkeep to do. Most of us don’t get nearly enough sleep and are entirely overscheduled, so forgive us if we forget things or have to miss out on things. We don’t have time for some of the things we used to have time for and getting out of the house can be difficult, but it doesn’t mean that we value relationships any less.
6. There’s no need to feel sorry for us or tell us that you don’t know how we do it. We are not doing anything that any other parent in our shoes wouldn’t do for their children, and we’re not doing it because we wanted to. We are just doing what it takes to care for our children.
7. Bring over a box of tissues and some chocolate and volunteer to mop up the latest puddle of vomit while we cry into a cup of hot cocoa and tell you all about it. Seriously. Some of us have had our social interactions reduced to people under the age of 5 and medical professionals. We need something in between. We don’t need you to fix anything for us, we just need someone to vent to who will still love us even though all we have to talk about is vomit and medical supplies.
The bottom line is that tube feeding is a learning process for everyone involved. It is difficult, and the support of family and friends is critical.