Remember miracle baby Brandon Grant? This is how he’s doing now.
Posted on 16 February 2021
After being born two months prem, losing 90% of his small intestine to infection and spending his first nine months in hospital, miracle baby Brandon is now a toddler – although for him, normal life looks a little different.
In December 2019 we shared Brandon’s story of surviving against the odds. Born two months prem, little Brandon developed a bacterial infection common in premature babies – but in his case it was aggressive one. At just six weeks old, he had two metres of his small intestine removed, leaving only 11cm intact. What followed was a landmark feat of ingenuity and determination by a multidisciplinary team at Mediclinic Midstream in Pretoria. And after nine months, Brandon’s parents – who had never given up hope – could finally take their son home.
Life with a tube
When we last heard from Brandon he was 18 months old and being fed special formula through a gastrostomy tube in his abdomen. Now going on for three, he’s grown into a strong, healthy toddler. “He’s still tube-fed in the afternoon for an hour-and-a-half and from 8pm until 7am,” says his mom, Anne. “But he is eating solids as well.” Every three months Brandon has a check-up with paediatric gastroenterologist Dr Anell Meyer. If his weight looks healthy, tube-feeding time gets reduced. For Brandon, having a tube in his tummy is normal. He can swim and bath with it and, thankfully, has never tried to pull it out. “One time he decided to go down the slide on his tummy and we nearly had a heart attack,” recalls Anne. “But it didn’t seem to bother him.”
Monitoring his diet
Brandon follows the FODMAP diet, which excludes any food that can ferment in the gut. “There are a lot of things he’s not allowed to eat – gluten, anything with onion or garlic in it, anything with celery in it, even some fruit – like apples, bananas, nectarines and peaches,” explains Anne. He goes to school in the mornings and eats lunch with the other children, but his meals are prepared at home – if lunch is, say, fish fingers, Brandon will have gluten-free fish fingers packed in. “I don’t want him to think that he’s different.”
“It’s amazing what your body can do”
Brandon’s small intestine grew to 30cm – still very short but more than double the length it had been after surgery. What’s more, his colon has evolved to take on some of the functions of the small intestine. “So his large intestine is a bit distended, but it’s amazing what your body can do. They say that’s the only good thing about it happening when he was so young,” says Anne. Even the food Brandon enjoys is bizarrely in line with what’s good for him. “He only likes veggies and meat and he only drinks water. It’s weird, but I think it’s his body’s way of telling him what he should have and what he shouldn’t have.”
Part of the family
Over the past five years the paediatric team at Mediclinic Midstream has worked hard to establish an intestinal failure unit where patients like Brandon can receive the specialised care they need. “Intestinal failure refers to different diseases or injuries to the intestine preventing it from absorbing adequate nutrients and water,” Dr Meyer explains. “Though people with intestinal failure may eat and drink, they don’t absorb enough nutrients from this and so become malnourished and dehydrated. They may require specialised feeds often given through different kinds of feeding tubes and in severe cases, intravenous feeds called total parenteral nutrition (TPN).” Brandon’s parents have a close relationship with the team. “They looked after him at Midstream for so long, they really feel like he’s their child,” says Anne. “When we walk in there, everyone from the security guards to the people at the coffee shop greet him by name!”
Looking to the future
In November last year, Brandon got a baby sister. “He loves her so much, it’s so cute,” says Anne. It’s also been a big adjustment for his parents. “We’re very used to being a doctor to Brandon but we’re still learning with this new little one!” While Brandon will likely be tube-fed for a few years to come, Anne doesn’t believe it will last forever – and she’s grateful for the progress he’s already made. “I always say people should really just stay positive,” she says. “I know it’s very difficult sometimes, but the thing is, even when things were looking so very bleak, we just stayed positive and it actually worked out.”