A STUDENT who “dines like a king” with double breakfasts and large portions is still at risk of becoming malnourished due to a rare disease.
Oliver Goss had most of his small intestine removed at birth in a desperate attempt to save his life.
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Very few people live without this vital part of the digestive system, and the 11-year-old now struggles to absorb the nutrients his body needs from food.
His mother, Nicole, 31, dedicated her life to feeding Oliver the most nutritious and healthy diet possible.
On a typical day, Oliver has two breakfasts – a big bowl of strawberries, bananas, kiwifruit and chia seeds, followed by scrambled eggs or porridge with honey.
He brings high-calorie drinks to school, along with nut and seed snacks, fruit cups, carrot sticks and hummus, and dairy-free and soy-free cookies.
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 potatoes and vegetables, or lentil curry.
Sometimes 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 survive, so now he’s 11 and we’re in uncharted territory.
“He is small for his age and still wears size eight to nine clothes.
“He’s about to start puberty, which means another growth spurt that his body needs to find the energy for.
“It’s crazy to see his meals. He eats like a king, but is still at risk of becoming malnourished.”
A scan revealed that her unborn son’s intestine was growing outside his body through a hole in the abdominal wall – a condition called gastroschisis – and Nicole was told he would need surgery immediately after birth.
“I just cried when I found out,” she said. “But they assured me that everything would be fine and that they would simply put his intestine back in when he was born.”
About one in every 3,000 babies is born with gastroschisis, and surgeons can usually relocate the intestine back into the abdomen.
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‘PETRIFYING’
But in Oliver’s case, the hole in the abdominal wall had already begun 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, doctors discovered that part of her intestine had already died.
“They had to remove most of the small intestine,” Nicole said. “After the operation, they took me to a side room and told me that his chances of survival were very slim.
“People can survive without part of the large intestine, but the small intestine absorbs nutrients from food, so it is crucial.
I’m on a mission to find the foods that stay in your body the longest
Nicole Goss
“The doctors told me that without this, Oliver would be in trouble.”
Oliver spent most of the first year of his life in hospital as specialists struggled to stabilize him.
“I don’t have any cute pictures of Oliver as a baby,” Nicole said. “In all the photos, he is 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 several years, she was able to figure out which foods he tolerated best.
“Because he only has a small part of the small intestine, everything Oliver eats passes through his digestive system very quickly,” she explained.
“I’m on a mission to find the foods that stay in his body the longest.”
FEARS OF PUBERTY
Despite his difficult start in life, Oliver surprised his doctors by becoming a happy, sociable boy who excels at school and loves playing with his friends.
“The other day I opened the door and he was on the doorstep covered in mud from head to toe,” Nicole said. “He’s a typical kid and, of course, he also loves technology.”
But Oliver is always hungry, so Nicole spends much of her budget on food and sometimes needs to be left alone so her son can eat larger portions.
They avoid processed foods and seek 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 could end up on a feeding tube again if we don’t get him adequate nutrition.
“I feel like I’m always in fight or flight mode, worried about Oliver’s health.
He is frequently in and out of hospital with stomach ulcers, headaches and digestive problems, and has consulted nutritionists throughout his life.
“There is a need for more awareness about conditions like Oliver’s.”
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What is gastroschisis and what are the risks?
Gastroschisis is a condition in which the baby develops a defect (hole) in the abdominal wall during development, while still inside the uterus.
It is usually on the right side of the umbilical cord and part of the intestine escapes through this hole and continues to develop outside the baby’s abdomen.
This happens in approximately 1 in 7,000 births.
There is a greater chance that your baby will be born prematurely and with low birth weight.
There are two important issues after birth:
- Returning the intestine to the abdomen and repairing the defect. This occurs through a primary or staged procedure (these terms will be explained later).
- Establishing your baby for milk feeding. This can often take a long time (several weeks to months) as the intestine that was outside the abdomen may not work properly. By drip, your baby will receive nutrition.
Source: The National Health Service
This story originally appeared on The-sun.com read the full story
