Hospital life : Does my child need a device? “Our gastrostomy case” Part 1

When you are blessed with a child that has complex health needs, you get unknowingly initiated into the minority of people who have to make tough decisions daily. Some are easy Yes’es while others keep feeling like yes...but! Not necessarily because Yes is not the obvious answer but because Yes becomes less straightforward and branches out with various ramifications and aspects for your child.

With many long term conditions, the answers are not quite clear-cut. Even the simplest answers are filled with inherent risks. For us as a family, one of the downsides of our son’s health condition is- loss of appetite. In his case, it began slowly. With time, it gradually degenerated into a complete food aversion. We knew an intervention was required to enable him get the necessary nutrition to thrive.

As a result, were asked to consent to an operation to insert a gastrostomy tube to help him feed. It was meant to be a simple consent or so they thought … When push came to shove, even with the decision staring us in the face, we just could not reach it. The fact that we knew he needed some form of intervention, did not reduce the shock and anxiety we felt as a family. A gastrostomy is a feeding tube or device inserted, to help a person get the necessary nutrition for the survival. I have put that in the simplest way possible because this is by no means a medical write-up.

The shock I felt as a mum that my son now needed a tube to feed with was too much to process… it horrified me. You know you see these things on the TV and never imagine that you will see it face-to-face. Let alone experience it directly with your own child needing it. I kept on feeling that perhaps if we persevered further with trying to offer him food by mouth (orally), he will start feeding.

Well you see, the decision was very hard to make. I tried not to lose sight of the fact that my child’s welfare had to come first always. He needed this device to help him live.  From every indication, there was no other option. It was either we found a way to feed him or he was slowly going to dehydrate and heaven forbid the outcome. Accepting the gastrostomy was really in my son’s interest. It was certainly going to help him. I had to remind myself that accepting this device did not mean that I was giving up on my son’s ability as a little boy to feed on his own. It meant that I was giving him a helping hand. Like everyone else, the thought of giving him the best opportunity to live life to the fullest was always my driving force.

Although I knew and understood this, I still felt uneasy. I was still hesitant. Perhaps it was all happening too fast. Maybe he needed more time to try.

“The gastrostomy was too major a procedure to try just for feeding him”, I thought.

I asked for more time to think about if this was the only option for my boy. I confronted other feelings that were holding me back. I confronted feelings that you too may be experiencing especially If you are at this point in your journey with your child. It may not even be a gastrostomy device that you are having trouble accepting. It may be any other medical device that you are being offered as a family to help your child.

You may have allowed yourself to be convinced by people that these feelings that cause you to hesitate don’t matter.  While it may be true that some of these feelings pale in significance in light of the health risks your child will have to deal with (especially when it is clear that these risks will become more inherent if you turn down the device), It is not true that these feelings do not matter. If they bother you, then they matter. Next time, we will look at some of them in detail. I will tell you about the ones I faced and hope that by taking you through how I confronted and dealt with them, it will make your own decision a bit easier to make.

Thank you for reading. For now, if you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.

Photo credit : Pixabay