Publications
Partners
Every bite of food, no matter how big or small, causes excruciating pain for Seanna Potgieter.
Every time she eats she needs to take pain medication to try to make meals bearable.
The thirteen-year-old from Johannesburg has been diagnosed with superior mecentric artery (SMA) syndrome, also known as Wilkie's syndrome, and she can't remember not being in pain when she eats.
Even the simplest things, like eating ice cream or snacking on treats, are practically impossible for her.
READ MORE | Mom devastated about 11-year-old daughter's shocking lung cancer dignosis
The disease has changed her vibrant daughter's life, says Seanna's mother, Nadia.
"She was a premature baby, but apart from that, she was healthy as a child. Yes, like most of us, she caught the seasonal cold every now and then, but she hardly ever had to go to the doctor," Nadia recalls.
In January 2022 Seanna and her brother were both sick with Covid-19, and about a month later she started experiencing a stabbing pain in her abdomen shortly after eating.
"At the beginning we tried cutting out different types of foods to see if she had any allergies, but nothing worked. We later gave her Buscopan for stomach pain, but it only worked for a short time," Nadia says.
Because the disease is so rare, doctors initially explored other possibilities for her condition, like stomach ulcers. Seanna was diagnosed with SMA syndrome in August last year.
The syndrome causes arteries to compress the small intestine which prevents food moving through it to the large intestine.
The disease occurs in between 0,01-0,3% of people worldwide, the Journal of Medical Case reports.
"What makes it difficult is that not a lot of research has been done on the disease because it is so rare. So doctors also don't know what causes the arteries to compress the small intestine," Seanna's father, Nicholas, says.
"These two arteries are almost strangling the small intestine," he explains. "A paediatrician once said that every time Seanna eats, it's like a heart attack in her stomach."
The teen only eats breakfast and supper, and through the day she drinks clear liquids, such as tea, iced tea and drinks with electrolytes. Most times she's afraid to eat because she knows it will be painful.
"She forces herself to eat so that she can get enough nutrients, but because her system struggles to digest the food and absorb the nutrients, she's also permanently tired," Nadia says. "If she's done something that requires a lot of energy, she needs an entire day to rest."
READ MORE | 'A huge tumour made my life hell, – now I have ovarian cancer'
Seanna has already had two surgeries at Life Fourways Hospital last year in an attempt to bypass part of the small intestine. The first operation worked initially, but the pain returned again.
A second operation followed, also without success. But there is a chance of a pain-free life for her.
Dr Domingo Alvear, an SMA syndrome specialist from America, has agreed to come to South Africa to help the teenager.
Despite having to pay the doctor's airfare and accommodation, the Potgieters are excited about the prospect of Seanna having a normal life again.
If all goes according to plan, Dr Alvear will perform the operation in June, as doctors at Life Fourways Hospital are in the process of applying for permission for him to work here.
"It's been a tough two years for Seanna, and it's hard for her that she's been in hospital so much this year. She will have to redo her grade seven year," Nadia says.
"But fortunately, we have a child with a positive outlook on life. We remain hopeful that she will finally be able to have a normal life if she has the surgery."
