Isla has had a feeding tube at two separate points in her life so far. When she was born, she was in the neonatal unit and couldn’t feed at all initially so as well as being on a glucose drip, she also had an NG tube placed. Babies with a cleft palate often have no suction which means they need specialist bottles & feeding methods to be able to feed by themselves. Isla struggled with this more than some and feeding really tired her, initially expending more calories feeding than she was eating.
By 5 weeks, she was bottle feeding so well that the tube was gone. Lip closure surgery came & went with normal feeding limitations which slowly built back up over the coming weeks. And then palate repair hit us all like a tonne of bricks & Isla hasn’t been able to feed normally since.
We often get asked how Isla’s tube works. It has a ‘screw top’ end which we then attach a syringe (or extension tube attached to a syringe) to. Milk is put into the syringe & goes down the extension and then through her tube. It is taped to her face to stop her pulling it out & we have recently found some more ‘child friendly’ tape (made by another Mum of a baby with a cleft) which suits Isla’s sensitive skin and Isabelle enjoys choosing each day’s picture!
All quite simple really but feeding tubes are tricky & tiring work for everyone. It’s not so much the actual feeding, although the logistics of feeds can be tricky, especially now she’s older. It’s all that comes with it. Tape changes are unpleasant at best, pinning your child down & holding their head while they scream is no fun. Tube change days are horrendous. If Isla pulls her tube out, it means a trip to the children’s ward to have it replaced. Stopping her pulling it out is a full time job in itself. We’ve had to put on gloves in recent 25 degree heat to stop her pulling it out on car journeys. Night times are also no fun, with her arms poppered inside a grobag & mitts turned over on her sleepsuits. We have to carry feeding supplies (one set per feed), tape, scissors & a spare tube everywhere with us.
We try not to let Isla’s tube stop us doing things. Days & trips out need to be more organised to make sure we have enough equipment & we stop for feeds but we feed anywhere & everywhere!
People ask questions which is great; the more awareness the better. Children tend to be very accepting of differences, much more so than adults. Once they know it doesn’t hurt & it helps her to have her milk, they don’t tend to ask much more but adults seem to find children’s questions uncomfortable and try to hurry them along. It amazes me that Isabelle has never questioned; she just accepts the changes that Isla has been through. We have always been very open & honest with her in order to try to prepare her for certain situations such as Isla’s surgeries but she’s very unphased and matter of fact about it all.
How long will Isla need her tube? We are hoping not too long, although it’s been over 3 months now. We are working with feeding specialists, speech & language, dietitians, the community nursing team and of course, Isla’s cleft team to try & improve her feeding but only Isla can really control it!
Incredible Isla 
I also have a cleftie baby but mine only had a mild cleft palate and a small cleft on his uvula. He also didn’t swallow right and was aspirating. After numerous surgeries, being diagnosed with PRS, they finally put a g-tube in. Which I’m curious why they haven’t put one in your lil one since they are so much easier than ng tubes? We also share the struggles of pulling it out and making sure we have a spare of everything for every outing. My son will be 2 next month and has been eating by mouth for a few months now. We hope to have the tube removed sometime this year!!! Keep fighting the fight and thanks for sharing your story!!
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I have a friend whose son has a feeding tube – and she has had some really awful experiences while out in public from people being rude. Always the adults though; like you say, children are far more accepting and just take everything in their stride. I love that Isabelle chooses the tape. How sweet. And well done to that mum for creating the child-friendly tape!
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