Tubie Siblings – And How NOT to Overlook Them

“Oh my God! He’s throwing up again! Is he okay? Is he breathing?”

This used to be a pretty normal sentence at the dinner table at our house a year ago. Our son was just a few months old, and had been NG-tube-fed since birth due to heart surgery and low birth weight. He was constantly throwing up, which was caused by overfeeding from the tube. Six months later, we weaned him off the tube, but it didn’t take our worries away instantly. Our conversations still centered on “How much did he take from the bottle?” “Did he eat his puree at lunch?” and “Why isn’t he eating anything?” – worries that all of us have when parenting a tube-fed or recently weaned child. But in the midst of all that chaos, what we didn’t realize was how our behavior affected his siblings, especially his older sister.

Long story short: When our twins were born, our oldest girl was 2.5 year old. At this point, she had already been missing her mom a lot, who was hospitalized for almost 3 months of the pregnancy. Three weeks after birth, one of our twins had a major heart surgery and was in intensive care, with a very big risk of dying. Thankfully, he survived, but eventually came home with a NG feeding tube. 

At this point, we were already beyond exhausted, not to mention worried all the time about our very tiny tubie and his lack of progress in eating. He ended up being tube fed for 10 months, and during this period, we found ourselves paying less attention to our big girl, since she seemed to be handling everything surprisingly well - but also because we didn’t have the strength to handle one more thing. So even when we saw signs of bad eating habits with her, we didn’t do anything about it.

I found out pretty quickly that this is pretty common: when one of your kids is tube-fed or recently weaned, it’s easy to overlook the other kids at your dinner table, or forget that safe and joyful meals are just as important for non-tubies as for tube fed kids. I learned this the hard way – that there are a few things to be aware of when your tubie is not an only child:

1) Don’t shut them out

At first, we thought that we were protecting our daughter by not telling her about what was going on with her brother. We would separate the kids as often as possible, let the grandparents take our daughter to the playground when tube feeding her brother, be one parent with her and one parent at with the twins, and so on. We thought the tube, the vomiting, and the scar from the heart surgery would be too much for her – that she was too little. But, as most little ones do, she picked up on everything, and even if she was in the other room, she would hear her little brother vomiting and would run out and ask: “What happened? Did he throw up? Why did he do that?” That’s when we realized that we had to involve her, to let her be a part of this extremely difficult journey. So we told her she had a brother who was sick, and that we had to take extra good care of him – that this was our responsibility, not hers. That he received his food through a “straw” (that’s what we called the tube), and that he sometimes vomited, but that he was okay right after. Of course, she didn’t understand everything, but she seemed to be more relaxed when she was involved. We also bought children’s books about going to the doctor, about being a disabled child, and about having siblings in general. They helped her put words and pictures on her feelings.

2) Mind your words

You may not think about it, but kids pick up on a lot more than we recognize. Since our daughter was only 2.5 when our twins were born, we were used to having conversations about her, and all other adult stuff, without her understanding much of it. When the twins came, and we suddenly became the parents of a heart baby with a feeding tube, we forgot that our daughter got older and older during the months that past. She suddenly understood a lot more than she did before! So, when we weaned our son off of the tube at 10 months, we began talking about food and intake all the time. And although we quickly learned to create nice and joyful no-pressure meals as a part of teaching our son how to eat orally, we still had adult conversations over the dinner table about his intake, how and what he ate, our concerns etc. 

But we shouldn’t have. Because as a result, our daughter ate less and less at family meals, and seemed more and more unhappy at the table. Even though we didn’t pressure her, she obviously didn’t feel safe at the table when everything was about intake and “eating victories.” Today, we only talk about any of the kids’ eating when they sleep. And actually, we try not to talk to much about this in general. They eat what they eat, when they eat, and we are still working on not worrying all the time.

3) Don’t let your anxiety create another feeding issue

Between ages 2 and 3, our daughter began behaving like a true toddler when it came to eating. She became extremely picky, suddenly didn’t want food mixed together, didn’t want a round plate, only a square plate, only red, not green apples etc. Sometimes, she would skip entire meals, and only eat at snack times for several days, and then would suddenly eat a “normal” meal. All of this is pretty normal toddler behavior. But at the time, because of all of the trauma we experienced with our son, we just saw another feeding challenge coming up. We were almost convinced that she was damaged by both the situation about her little brother and the lack of attention from her parents.

At night, I would stay awake for hours researching what to do with a 3-year-old with an “eating disorder,” and how much she should weigh at this age. During the day, I began looking at her and suddenly thinking she looked so skinny. It took time, but today, I know that nothing is wrong with her. She has definitely been watching way too much iPad at dinner times, and therefore at some point lost connection to her body to tell her when hungry or full. She also definitely had too many ice creams and candy to compensate for our lack of time and attention for her. But guess what? She survived. And she is okay. Mostly because we, as parents, stopped worrying so much.

4) Treat ex-tubies and their siblings the same

When we weaned our son from the tube, we discovered a whole new world in terms of eating and mealtime dynamics. We learned the principles behind the Division of Responsibility, the power of letting the child lead, and why it is important not to offer food or snacks all day. Besides reducing the calories in the tube, our son felt safe eating because we let him decide how much or if he would eat at all. We accepted every single “no cue” and became extremely good at reading his signs. Yet, even while doing that with him, we would still try to encourage our daughter to take “just another bite,” follow her around with a spoon like a crazy person, or let her watch the iPad or have toys at the table while we fed her passively. We didn’t think of it as a problem, because “at least she would eat”. But as the months went by, she became more and more dependent on distractions, on being fed, and on sitting for hours at the table, but only eating if we fed her or reminded her of every bite. 

Eventually, we became aware of this inconvenient truth: We had actually been acting like a “human feeding tube” for our daughter. And she almost forgot how to self-regulate. So, we weaned her of the iPad cold turkey. It was hard, but only took a few weeks to accept this. Then, we applied all the same habits with her that we have worked on with our tubie. Today, she is still toodler-picky and extremely stubborn around food, and she still likes snacks times better than main meals. But most times she comes willingly to the table, and we try to have a nice meal as a family, where the atmosphere is the same for everyone.

On the whole, the focus of weaning eventually becomes less about just the child with a feeding tube, and more about empowering the whole family to enjoy mealtimes together. Tubie siblings can be an amazing part of those mealtime dynamics, so if you’re just beginning your journey through weaning, I hope these tips are helpful.

Stinne Kaasgaard, Parent Coach & Head of Communications, Europe