Together – Brandon Grant
Posted on 15 December 2019
Today, Brandon Grant is 18 months old – a happy, smiling, bouncing little boy. But for his first nine months, he lived in intensive care, fighting for his life.
Brandon Grant was born at a local hospital in Benoni in March 2018, two months early. “We were not expecting him to come so soon,” says his mom, Anne. “He stayed in intensive care for the first few weeks. One day, we went to check on him – and we got such a fright.”
Lying alone in Neonatal Intensive Care Unit (NICU), Brandon’s stomach had swollen enormously. He was blue in the face, and vomiting uncontrollably. At just five weeks old, the baby had contracted necrotising enterocolitis (NEC), a common condition in premature infants that occurs shortly after birth, when tissue in the intestine is attacked by bacteria. This can lead to damage in the intestinal wall, and germs leaking into the abdomen and bloodstream. If not treated immediately or effectively, NEC can lead to widespread, rapid and life-threatening infection. By the time he had emergency surgery to treat the disease and prevent further damage, Brandon had already lost 90% of his small intestine.
“This was a dire diagnosis,” says Dr Anell Meyer, the receiving paediatric gastroenterologist who saw Brandon at Mediclinic Midstream. “It was so advanced that even a few decades ago, we would have said his condition was not compatible with life.”
When Anne Grant visits Mediclinic Midstream today she is recognised by almost everyone. “They don’t call me Anne, or Mrs Grant,” she laughs. “They call me Brandon’s mom.” But it wasn’t long ago that she walked into the hospital with no hope for her baby’s survival.
Brandon was saved by a fast and effective treatment plan, led and developed by a team of experts. The specialists who contributed to the success of his case include a paediatric gastroenterologist, a paediatric surgeon and a critical care specialist who cared for the baby boy every day for nine months.
Necrotising enterocolitis is an infectious disease of the intestine, says Dr Paul Stevens, a specialist paediatric surgeon at Mediclinic Midstream. “When he was referred to us, he’d already had extensive surgery to remove most of his small intestine. This is a standard treatment in extreme cases – without that surgery, he would not have survived.”
How extensive exactly?
“The doctors had to remove over two metres of his small intestine,” Anne explains. “So he really only had about 14cm left. This means he cannot absorb food like a normal child. At five or six weeks old, that’s devastating.”
Anne and Justin, her husband, were referred to Mediclinic Midstream, having been told that Brandon’s only hope was an intestinal transplant. But these procedures aren’t performed in South Africa, says Dr Meyer. “It was a difficult conversation. We had to say, ‘There is a low chance that your son will survive this. But there is a lot that we believe we can do.’ ”
Brandon’s condition, where he has only a fraction of intestine to work with, is known as short bowel syndrome. SBS, or short gut syndrome, is a serious malabsorption disorder that causes chronic bouts of diarrhoea – which in turn can lead to dehydration, cramping and bloating. Malnutrition is a common result of these symptoms, as the baby is unable to absorb enough water, vitamins, minerals and other nutrients from food. In a five-week-old baby, who needs every nutrient he can get to develop and grow, this can be deadly.
According to a limited study performed in the United States in 2012, short bowel syndrome affects about three in a million people. There is no cure.
Nevertheless, Brandon’s team of doctors saw reason to hope. “We know the gut can adapt,” says Dr Meyer. “The first two years of a baby’s life: that’s the golden window where the intestine can grow, and his body can bounce back.”
Dr Stevens agrees. “That’s the nice thing about kids: they grow up,” he says. “We knew his intestine would grow with him, and as it gets longer, it becomes more effective at processing more food, and different kinds of foods. We believed we could get him there.”
The key: effective treatment, and trust. “Nine months is a long time to live in hospital,” says Anne, “and we were anxious and confused just walking in. But they treated us like family. There were so many doctors involved in Brandon’s case and they took the time to meet us individually. They all met once a week, as a team, to discuss his treatment, to see how it was working and if they needed to change anything. So they were clinical and thorough. But more than that, they’re just really nice people. And that makes a big difference.”
So does honesty. Brandon’s case was so unique that at many stages of his treatment, his doctors were unsure of which path to take. “They kept us close every step of the way,” Anne remembers, “and if they were uncertain, they would say so. They would come to us and say, ‘Right now we have Option A and Option B.’ And every time, they made the right decision.”
Brandon’s primary chance of survival lay in his feeding programme. On top of his short gut challenge, Brandon is also allergic to dairy. With such a small section of small intestine remaining, Brandon required specialised feeding management, says Dr Stevens. “The challenge was to help him absorb enough nutrients to grow and develop. When I saw him initially, in June 2018, he was not on any significant feeding volumes – which means he was not taking in enough milk to survive.”
While the long-term goal was to help Brandon adapt and grow to the point where he’d be able to process high-volume oral feeds, the immediate objective was to get nutrients into his veins by any means possible. This was Dr Stevens’ first interaction with Brandon: to insert a central venous catheter.
“Unfortunately, he’d already had a number of central lines inserted into various areas of his body, since birth,” Dr Stevens says.“Usually we use areas in the neck, chest or groin, and sometimes in the arms, to give us access to the larger veins, but using those areas repeatedly is dangerous as it leads to a risk of infection and veins closing up.”
Finding a route into a large vein on such a small baby is a challenge, but one of Brandon’s doctors were able to resolve after a few attempts. The next challenge: finding the right nutritional formula to feed the baby without overloading or stressing his system. “In the intensive care unit, Brandon was fitted with a tube running from his nose directly into his stomach,” says Dr Stevens. “This provided a constant supply of milk, at a small volume. This idea was to give his shortened small intestine time to absorb the food.”
Over months, Brandon’s gut adapted – to the point where Dr Stevens began to think about how to facilitate a similar feeding system at home. His next step was to insert a gastrostomy tube through the abdomen and into the stomach, which can be hidden from public view. “Tubes in the nose are horrible things, especially for kids, who pull them out,” he explains. “But it’s also not nice for moms, when they get asked by strangers, ‘What’s wrong with your baby?’ ”
Brandon’s team of specialists took a proactive, positive approach to his treatment. “We had to try to get him to grow,” says Dr Morar. “That was our priority: to get nutrients into his body, help his body to develop and get stronger. The stronger he became, the easier his treatment would be.”
Dr Meyer is one of only six paediatric gastroenterologists in private practice in South Africa. Together with other specialists and subspecialists, she has set up an intestinal failure programme at Mediclinic Midstream, designed to receive patients with short bowel syndrome and other serious gut health conditions within a multidisciplinary team of experts.
“We have seen a number of patients with similar disorders,” she explains, “and these patients need close management and specialist care. Clinical experts, critical care specialists – they play a vital role. Dieticians too; we have three of them dedicated to our team. All of us work together to construct a treatment plan specific to each patient.”
One major benefit of a team-led approach is that it leads to earlier diagnosis. “If gynaecologists and paediatricians in the area know that we have a team of experts here, they are able to refer their qualifying patients to us quickly – that gives us the luxury of being able to provide fast, effective treatment, helping the gut to adapt, before the condition has worsened.”
Brandon has come a long way. And there is a long way to go. But the progress he has made, with help from his team of doctors, has given his parents reason to hope.
Today, Anne sticks to a strict regimen of Neocate, a nonallergic amino-acid-based formula administered through a port directly into his stomach. By normal feeding standards, this is a complex and drastic feeding routine that requires a clinically sterile environment and regular doses. But it is progress.
“It has been a long road,” says Dr Morar, “and a successful one. When he got here, Brandon was desperately sick. Now, he’s a happy, growing boy, back at home. For us, that is what success looks like.”
At 18 months old, Brandon has spent more time in hospital than most people spend in their lives. “He had glucose tests three times a day, and blood taken twice a week. But he has very few areas where the nurses can find a vein. So he gets pricked by almost too many needles to count. I remember one day he had 16 pricks, in 24 hours,” says Anne. “But nothing gets him down. He is smiley, chatty, carefree. You’d never know we spent so long battling to get healthy. We are getting to know him now. He’s growing up. It’s wonderful to see.”
Anne says the staff at Mediclinic Midstream joke that Brandon is the president of the hospital. “When we walk in there we are greeted by everyone we see. They all know him. They all want to know how he is. They love him.”