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This article first appeared in a PINNT newsletter

My daughter Rosie was born in November 2016, and had an NG (naso-gastric) tube fitted almost immediately.  She has Downs Syndrome, and congenital heart disease. Although she was relatively ‘heart healthy’ at birth, she spent much of the time sleeping and couldn’t get the hang of breastfeeding.  It was clear after 5 days that we would be taking her home with a feeding tube in place. The Trevor Mann Baby Unit in Brighton were great in supporting us in both breastfeeding and tube feeding.

RoRo asleep in TMBU

Even though we knew before her birth that she might be tube fed at first, it was a significant adjustment bringing home a baby with a tube. It was a really steep learning curve for us, from learning things such as who we got which supplies from, what to do when her tube came out, and who was responsible for what.  

 

A year on, tube feeding is second nature and we know exactly what we’re doing, but it was really very daunting!

 

In the early days, we hoped that Rosie would be able to do without the tube soon, but then at 5 weeks old, she went into hospital for bronchiolitis, went into heart failure, and pretty soon she was on continuous feed to try and get her to gain weight.  She would vomit if moved just slightly, or if the milk went in faster than 22ml/hour, so trying to get medication into her and have her gain weight before her heart surgery was a daily battle.

Rosie was transferred to the Evelina for heart surgery in early February. We saw other babies a similar age to her have their heart surgery and then go home bottle fed.  We had high expectations and hopes that this would be the same for Rosie.

 

As soon as Rosie had recovered enough, a feeding speech and language specialist reviewed her and diagnosed an unsafe swallow.  We kept trying Rosie with a bottle and thickened milk, but very slow weight gain and her inability to properly grasp bottle feeding, meant that once again we brought Rosie home from hospital with a tube.

 

We are incredibly grateful for the tube, in that its kept our precious girl alive and thriving. The feeds which seemed all consuming at the start are second nature now. We never expected it to feel easy.  It has meant we’ve been able to manage several bouts of bronchiolitis at home,

 

We were keen for Rosie to go to her sister’s nursery, partly for her development, and partly so I could return to work. Nursery started the process of training for the tube some time before I was due to return to work, but even so, it was still some months before they were signed off and ready to do her feeds on her own.  Having someone else able to feed her has been a significant weight lifted off our shoulders.

 

Rosie’s speech and language therapist agreed for us to wean her with solids, and encouraged us to do so early.  Despite showing no interest in liquids and milk, Rosie just loves her food. It’s been wonderful to watch her shovel food into her mouth, broccoli is a firm and messy favourite! We’re able to get extra fluid in her through her purees, but with her slow weight gain and need for formula and water, we are some way off losing the tube.  We took some scary steps in significantly cutting down her tube feeds to encourage her to eat foods, and thankfully it paid off and she really does have a good appetite for her food.

Rosie with Down Syndrome eating and tube fed

We are currently having the discussions about a PEG or continuing with the NG tube.  We live in hope that one day Rosie will safely gulp water down and we can do without the tube.  I’m sure that day will come, we just need to keep encouraging her. In the meantime, tube feeding is second nature to our family and can only a positive thing.

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