By: Jermaine Wright|
Caring for a child with ongoing medical needs is never easy and for those who need enteral nutrition, it can be a daunting.
Enteral nutrition is the practice of delivering nutrition to the gut either orally or through a tube or other device. Many children are reliant on enteral feedings to either supplement their nutrition or as a complete source of their nutrition. One of the common ways doctors can make sure kids with trouble eating get the fluid and calories they need to grow is a Gastrostomy Tube.
A Gastrostomy Tube (G-tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach.
Managing children on G-tube feedings can require a team of providers to work through complex issues such as feeding schedules, weaning from tube feeding, sensory implications of tube feeding, treatment of pain or nausea associated with eating, oral-motor issues, and behavioral issues in the child. Sounds like a lot, and it is.
The difficulties of caring for Gtube-fed kids
The everyday social and emotional issues that derive from having to care for a G-tube-fed child can be very taxing on parents much less single moms. But one mom is on a mission to help families with G-tube babies have a much easier life.
Andrea Young, a young mom of a G-tube baby herself, created (name of book) – a nutritional cookbook for kids that provides instructions to parents on how to get the best nutrition possible for their kids. As they say ‘experience is the mother of wisdom’ and it was a challenging experience as a young mom that inspired Andrea to create this nutritional guide.
“At the age of 21 taking care of a baby like that (GTube reliant) was very hard – it was the grace of GOD that kept me strong,” said Andrea.
Unfortunately, Andrea had some difficulties during labor which forced an emergency delivery. As a result of the complications, her son developed HIE (Hypoxic Ischemic Encephalopathy) – an injury caused by oxygen deprivation to the brain. It is a delicate condition that requires immediate medical intervention and careful sustained care. HIE can cause developmental delays, cognitive issues, and neurodevelopment delays among other health defects.
Andrea’s son was not able to eat on his own and at six months doctors wanted to keep him on formula which Andrea objected to.
She was determined to feed her baby the organic way, and after seeking guidance to little avail, she went about finding the answers on her own using heavy research.
The complexities of Gtube nutrition planning
Though a healthier method, due to the complexities of her son’s condition, going the natural route presented a host of difficulties that Andrea had to contend with. Despite the benefits and widespread use of G-tube feeding, there are several underlying complications that may arise such as underfeeding or overfeeding.
According to the World Journal of Gastroenterology, the incidence of clogged feeding tubes in percutaneous endoscopic gastrostomy is reported to be as high as 23 – 35%. Clogging is especially common when thick enteral feeds, bulking agents and medications are delivered through relatively small PEG tubes.
“My biggest challenge in the G-tube feeding process was actually ensuring the food wasn’t too thick or too thin,” Andrea informed.
Studies have also shown that there is a high prevalence of malnutrition in children receiving long-term ENS (Enteral nutritional support) which keeps them at risk of developing secondary diseases which further compromises their quality of life and may lead to detrimental outcomes.
Therefore, a proper tube feeding plan and careful tube management are critical to providing the required amount of nutritional support needed for normal growth and development of Gtube-reliant kids. But it is not an easy thing to achieve.
“Coming up with a plan and guide was very difficult. I had to do a lot of research just to figure out the right ingredients and volume so he wasn’t over or underfed. I eventually found calorie counts in different vegetables and fruits that were equivalent to what he needed on a daily basis,” Andrea added.
Inspiration to help parents of Gtube babies
Initially, she had the idea to write the book just for her son’s benefit but after realizing how difficult it was she decided to publish it to help other mothers who will go through the same stressful experience.
“Coming up with the guide eliminated a lot of stress for me so I am looking for this book to make life a lot easier for other parents and to guide them in helping their kids to achieve the required amount of nutritional balance needed for their proper development.”
She was beaming with pride to note that her now two-year-old son is doing very well and “has overcome many things doctors said he wouldn’t,” which is a testimonial to how effective her methods were. But for Andrea the book is just the beginning as she wants to do more to help families caring for Gtube babies have a much easier life.