Despite My Initial Fears, I Now Praise the Feeding Tube

Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG) tube that previously passed down his nostril and throat.

Alfie first had an NG tube for the first 23 days of his life. He was only 3 pounds, 8 ounces (1.6 kg) when he was born, so this feeding tube helped him grow big enough to go home. By the time he arrived home, he was fully breastfed.

Alfie continued tracking well growth-wise until I returned to work when he was around 9 months old. At this point, I was struggling to pump at work, and Alfie was often getting sick at day care and struggling to take bottles. Alfie had not yet been diagnosed with LAMA2-related muscular dystrophy, and we didn’t know that his weak sucking was a symptom. He then got gastroenteritis and was admitted to the hospital at 10.5 months old, weighing only 14 pounds, 5 ounces (6.5 kg).

He was diagnosed with failure to thrive, and doctors once again inserted an NG tube in October 2019. I remember feeling very overwhelmed and upset. We decided as a family that I would take another leave from work. I couldn’t get my head around the seemingly mammoth task of caring for a child with an NG tube, let alone him attending day care with all the accompanying sicknesses.

I felt like we’d never be able to leave the house again, with all the tubes and pumps and sterilization and syringes and tapes and formulas. I remember thinking, “If we can just get him to put on weight, we can take the tube out again!”

But then, thanks to the feeding tube, we saw Alfie thrive! Eventually, I suggested to Alfie’s team that we get him a PEG tube.

His PEG tube has been a lifesaver — literally. At the beginning of this year, the dreaded day care sicknesses unfortunately returned. I even had our hospital bags packed and ready. Alfie wasn’t keeping his formula down. His heart rate was through the roof. He was hot, pale, and miserable.

Thanks to his feeding tube, I was able to keep him hydrated and give him paracetamol and ibuprofen. And I could do all of this from home, which is always a blessing, but was especially so during a pandemic.

It’s hard to believe how quickly the feeding tube became second nature. Now, I don’t know how we ever managed without it. And my favorite thing about the PEG tube? We’re able to fill Alfie up with all of the nutrition he needs without any effort from him, allowing him to save all that energy to play, learn, and grow. Alfie still eats and drinks orally, but for now, it’s more about social interaction and enjoyment.

It’s crazy to think that our tiny, third-percentile baby is now between the 50th and 75th percentiles for height and weight, and it’s all thanks to something that once seemed so frightening.

***

Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.