When Natan Shai’s doctor suggested G-Tube Feeding I was pretty much gobsmacked. It’s not that it never crossed my mind that one day he may never eat orally again, I’d seen plenty of my friends’ children in the GHF group who had G-tubes. I was just hoping that we would never reach that mark and that he would get better at eating and swallowing as time went on.
Unfortunately, that didn’t happen. In fact, as time went on it became harder and harder for Natan Shai to swallow and he started aspirating his food and getting repetitions of pneumonia. And when he did actually manage to get enough down him he would more than often start coughing and then he would throw it all up……arghhh. Needless to say, although he was always very skinny he was losing weight way too quickly in relation to his height and it was starting to get scary.
How Was I To Make Such An Important Decision??
So where does Mommy go when she is so confused and apprehensive about what to do with Natan Shai???……yep you got it, to the GHF facebook group (Global Hydranencephaly Foundation Family-to-Family Resource Network). So I asked the group about the pros and cons about getting a G-tube and I was advised by other Mothers in the group that in Natan Shai’s case it was definitely something that should be seriously considered.
I was told that although a tough decision, it would be the best thing that I ever did for him! In fact, the scariest thing I heard was that if I DIDN’T do it I might NEVER be able too! That’s because if Natan Shai got too weak then the doctors would not be able to operate, although it’s not a complicated operation it still requires a general anaesthetic.
So with my mind made up, I went ahead and got an appointment with our Gastro doctor, Dr. Hino, a very nice man who was patient with all of my questions and understood my predicament. Guess how many appointments I made for the operation until we actually did it?…… FOUR!! Yep four times I had everything all set up and then chickened out at the last minute! I was terrified of going through with this operation!
Yes! – We Did It!!!
Finally exactly 2 years ago today (Dec. 2014) we went through with the op and Natan Shai got his G-tube! Yes, it was difficult to get used to in the beginning and he only got the original tube replaced with a Mic-Key button a couple of months later. (A Mic-Key button is MUCH easier to look after and way more comfortable).
Was It Worth It?
YOU BET!! We have never looked back. Within six months he had put on about a third of his body weight and went up from 12kgs to 19kgs! He was looking so much better, wasn’t getting sick nearly as much and was much stronger than he used to be. But the really amazing thing was that he stopped having seizures (which he’d suffered from on a daily basis) pretty much completely!! I don’t know what the connection is but I put it down to him being so much stronger.
Do I Have Any Regrets?
I don’t feel that he misses eating orally, I think it was very stressful for him too, as much as it was for us. I do try to give him the one on one time that he would have gotten if I’d have been feeding him, usually we use that time to play with his iPad or something like that. So he’s really not missing out on anything, actually to the contrary, I feel that he has gained a lot since making that difficult decision to give him a G-tube.
Are You Contemplating A G-Tube For Your Child?
So if you are in the same situation as I was in and going backwards and forwards with the decision to get your child a G-tube then I would seriously consider talking to other Mothers about their experiences with a feeding tube. Obviously, this decision needs to be talked over with your doctor first who will advise you in the first place if it is something that your child could benefit from. It is certainly not for every child who is not putting on weight as there are other solutions. But if your child is like Natan Shai and you are struggling to get anything down him without him throwing up or aspirating then I would seriously advise checking out G-tube feeding as a solution.
Today thank God, Natan Shai is healthier than ever and I believe that the G-tube has a big part of that. In fact I’m not sure he would even be with us today if we hadn’t done this operation.
Thanks for reading and if you have any questions do not hesitate to contact me or leave a comment below. I’d love to hear about your experience with G-Tube feeding too!
With Much Love,
Hannah (Natan Shai’s Mom)