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.
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our child’s feeding tube at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few fathers of children with feeding tubes do not even know how to do everything.
We need to arrange childcare or for the other parent to be home so that someone can take care of our child with a feeding tube. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) is all set up. All that said, we do like to see friends and go out. We appreciate being asked. Don’t assume we will not go. Like any parent, we might have things that come up that require us to change plans.
Birthday parties with lots of kids can be loud and boisterous. Many kids are overwhelmed because of sensory issues. This may lead to crying and vomiting. Parents of children with feeding tubes may want to know a lot more about the environment, the number of people, and noise levels so they can vet the environment and weigh how their children will do. Moreover, parents are concerned about exposing their kids to germs. A simple cold for a healthy child may land a child with a feeding tube in the hospital. Unfortunately, this is true.
Some children struggle when eager relatives rush over to hug or kiss them. It may take them time to adjust to a new environment (and realize nothing bad like a medical test is going happen there). Moreover, holiday gatherings have a lot of food. Some of our kids want to eat, so it can be hard to limit food to what is safe for them. We would appreciate that food be kept out of reach of our kids and that a parent’s permission is received before any food or drink is served to our kids. For example, some children may happily accept water or juice, but they may not be able to have thin liquids because liquid will go directly into their lungs when they swallow.
Any child in a restaurant can be difficult, but kids with feeding tubes typically can’t be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Waitstaff may even take it upon themselves to bring your child food (this has happened to a number of parents who are then left to explain why their child is unable to eat).
Just because you see a child have a bite or two of something, doesn’t mean she can eat or drink enough to sustain herself and grow. And, a child with a feeding tube may turn his head away from the cookie you think he is going to eat. “All kids like cookies!” may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn’t that we haven’t stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kids can’t eat. Those don’t often go away overnight.
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.
There are a lot of things that keep parents of children with feeding tubes up at night. There really isn’t such a thing as letting a child with a feeding tube cry it out. The vast majority of our kids have reflux, and crying quickly can lead to vomiting. Kids with reflux aren’t always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues, and you are looking at a parent who is wondering when the last time she had enough consecutive sleep to dream.
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening.
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.
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn’t have to see. Many of us have seen our kids intubated and connected to so many wires that you aren’t sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons. Things like ear infections and shots don’t even make us blink anymore.
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don’t particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. “It is great that [child] is handling this so well.” Or, “I know it must be hard on you, but you are doing a good job.”
A tablespoon can be a reason to jump for joy. A successful new food may prompt a Facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.
Understand, we may be sensitive. Please think about what you say to us. People always think kids are cruel, but often children are the most understanding. They ask questions and we are very often happy to explain. Children accept and move on. It is adults that are usually cruel. We have been told to feed our kids in bathrooms or not feed them at all, because it may make others uncomfortable. We may have been asked what is wrong with them or shouldn’t they be in the hospital in unkind ways. People think we are cruel for making small children wear backpacks, or that we have them on a leash if we carry their backpack for them. We could go on and on. Just remember we are talking about how our kids get their nutrition and hydration.
Being told that your child needs a feeding tube is hard. Having to make decisions about whether or not to tube feed is hard. Managing the care of a child who is medically complex at home is hard. But one of the hardest aspects of having a tube fed child is being judged and criticized during a time when you are already feeling vulnerable, helpless, and perhaps even questioning your own judgment.
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.
Please DO NOT:
Feed any child something without the parents’ permission.This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from thir diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering.
Compare a child with a medically complicated history to a typical child who has never had serious problems with food.We appreciate that your children or others in the family are wonderful eaters. We just want people to look at what our children can do and what they have overcome. If all you know is food hurts, it is a huge accomplishment to tolerate small amounts of food and have it not hurt.
Ask me when my child is coming off the tube! The real answer is that a lot of parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex. This also applies to other medical equipment or developmental delays our children may have.
Remind me of the “what ifs.” Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.