Tube Feeding is Helping Corey Tackle His Physical Challenges

By Corey’s Mom, Jaime 

Corey and JamieMy son, Corey, was born at 35 weeks and diagnosed with congenital heart defects and DiGeorge syndrome, a primary immune deficiency syndrome. As an infant, he tired easily when feeding, but between breast milk and added-nutrition, he was able to gain weight and was slightly chunky until the age of four. After that, it became a battle to get Corey to eat and gain weight. Corey never had much of an appetite and getting him to eat is always a challenge. When he was around 10, his growth came to a halt. He did not gain a pound for three years! He was always below the normal growth curve but was able to stay on his own curve for several years. The last few years, however, he fell off that curve and was considered malnourished. 

Keeping Corey strong is crucial for he needs many surgeries. By the age of four, Corey has had three heart surgeries and one brain surgery. He has a donor heart valve and it needs to be replaced approximately every 10 years. Corey is now 14 years old. Last year, we found out Corey also needs back surgery and the orthopedic surgeon said he could not perform it in Corey’s current state. Corey’s cardiologist referred us to a dietitian. Together, we spent approximately nine months trying to enhance his calorie intake. The nutritionist dietitian eventually suggested a feeding tube as we were not able to get him to gain weight with oral nutrition. On January 5, 2018, Corey had a NG tube inserted into his stomach by the nutrition support nurse. Corey has done FANTASTIC ever since. In six months, he’s gained 7 pounds! That is HUGE! I’m hoping with his continued weight gain, Corey will be strong enough to tackle his next set of surgeries.

Corey and I know he will have the NG tube for as long as he needs it; until he can eat enough calories each day to gain weight and grow strong. I am guessing that will be quite a long time as he only eats two small meals a day. His burns so many calories that it requires around 1,400 plus calories for him to gain weight slowly. Corey is amazing fighter and NG tube feeding is keeping him nourished, allowing him to grow and face his physical challenges.


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