My son, 11, is a ‘human grow bag’ – he can’t eat enough and I fear he’ll end up malnourished after terrifying diagnosis
A SCHOOLBOY who “dines like a king” on double breakfasts and large portions is still at risk of being malnourished due to a rare condition.
Oliver Goss had the majority of his small intestine removed at birth in a desperate bid to save his life.
Very few people live without this vital part of their digestive system, and the 11-year-old now struggles to absorb the nutrients his body needs from his food.
His mother, Nicole, 31, has dedicated her life to feeding Oliver the most nutritious and healthy diet possible.
On an average day, Oliver eats two breakfasts – a large bowl of strawberries, bananas, kiwis, and chia seeds, followed by scrambled eggs or porridge with honey.
He takes high-calorie prescription drinks to school, along with snack bags of nuts and seeds, fruit pots, carrot sticks and hummus, and dairy- and soya-free biscuits.
In the evening, Nicole prepares an after-school snack for Oliver, followed by substantial portions of healthy meals such as spinach and egg wraps, chicken or fish with sweet potato and vegetables, or lentil curry.
At times, single mum Nicole, from Burgess Hill, said her son “feels like a human grow bag.”
“Even the doctors don’t know what to do with Oliver,” she explained.
“When he was born, they didn’t expect him to live, so now he’s 11, we’re in uncharted territory.
“He’s small for his age and he’s still in size eight to nine clothes.
“He’s about to start puberty, which means another growth spurt his body needs to find the energy for.
“It’s crazy when you see his meals. He eats like a king, yet he’s still at risk of being malnourished.”
A scan revealed her unborn son’s bowel was growing outside his body through a hole in his abdominal wall—a condition called gastroschisis—and Nicole was told he’d need surgery immediately after birth.
“I just sobbed when I found out,” she said. “But they reassured me it would be okay, and they would just put his bowel back in again when he was born.”
Around one in 3,000 babies are born with gastroschisis, and surgeons are usually able to relocate the bowel back inside the abdomen.
‘PETRIFYING’
But in Oliver’s case, the hole in his abdominal wall had already started to close, trapping and cutting off the blood supply to his small intestine.
When Nicole gave birth prematurely at 33 weeks on November 2, 2012, medics discovered that part of his bowel had already died.
“They had to remove most of his small intestine,” said Nicole. “After the operation, they took me into a side room and told me his chances of survival were very slim.
“People can survive without part of their large intestine, but the small intestine absorbs nutrients from food, so it’s crucial.
I’ve been on a mission to find the foods that stay in his body the longest
Nicole Goss
“The doctors told me that without it, Oliver was in trouble.”
Oliver spent most of the first year of his life in hospital as specialists battled to stabilise him.
“I don’t have any sweet baby photos of Oliver,” said Nicole. “In every picture, he’s covered in tubes and wires.”
When Oliver was finally sent home from Brighton Hospital, Nicole said it was “petrifying.”
He initially had a feeding tube, but through trial and error over a number of years, she was able to work out which foods he could best tolerate.
“Because he only has a tiny section of small intestine left, everything Oliver eats passes through his digestive system too quickly,” she explained.
“I’ve been on a mission to find the foods that stay in his body the longest.”
PUBERTY FEARS
Despite his rocky start to life, Oliver has amazed his doctors by growing into a happy, sociable boy who excels at school and loves playing out with his friends.
“The other day I opened the door, and he was on the doorstep covered head-to-toe in mud,” Nicole said. “He’s a typical boy—and of course, he loves tech too.”
But Oliver is always hungry, so Nicole spends a large portion of her budget on food and sometimes has to go without herself so her son can have larger portions.
They avoid processed food and aim for high-energy meals.
As soon as Oliver goes to bed, Nicole is online researching new treatments and more nutritious meals.
“I’m worried about what’s going to happen when he hits puberty,” she admitted.
“He may end up on a feeding tube again if we don’t get his nutrition right.
“I feel like I’m always in fight-or-flight mode, worrying about Oliver’s health.
He’s frequently in and out of hospital with a stomach ulcer, headaches, and digestive issues, and he has seen dieticians throughout his life.
“There’s a need for more awareness of conditions like Oliver’s.”
What is gastroschisis and what are the risks?
Gastroschisis is a condition where the baby develops a defect (hole) in the abdominal wall during development, while still inside the womb.
This is usually to the right side of the umbilical cord and some of the bowel escapes through this hole and continues to develop outside your baby’s abdomen.
This happens in approximately 1 in 7,000 births.
There is an increased chance that your baby will be born premature and low in weight.
There are two important issues after birth:
- Returning the bowel back into the abdomen and repairing the defect. This is either by a primary or staged procedure (these terms will be explained later.)
- Establishing your baby onto milk feeds. This can often take a long time (several weeks to months) as the bowel which was outside the abdomen may not work properly. By a drip your baby will be given nutrition.
Source: The NHS