Parenting is never simple, but for some mothers, the journey is filled with challenges few can imagine. This is the story of a South African mom whose baby developed severe feeding difficulties, leading to hospital stays, rare diagnoses, and eventually, life with a gastrostomy tube (G-tube). She bravely shares her family’s experience in hopes of finding and supporting other “tubie” families across the country.
When It All Began
“It started when my daughter was seven weeks old. She had diarrhea after her six-week shots. The nurse assured me it was nothing to worry about, but it never stopped. I was in contact with her pediatrician via email, and while my baby seemed fine on the surface – making wet nappies, no sunken fontanelle- but something wasn’t right.”
Eventually, the pediatrician checked her weight and admitted her to hospital. Tests revealed she had E. coli, though the source was unclear. “One suspicion was bath water,” Liora recalls. “She was treated with antibiotics and discharged, but the diarrhea never went away.”
A Scary Turn
A week later, things worsened. “She started passing blood. No poop – just blood. It was terrifying. That weekend, she received her first feeding tube through her nose because she wasn’t drinking.”
A scope and biopsy revealed colitis – an inflammation of the intestines. From then on, she spent weeks in ICU, relying on TPN (nutrients fed through a vein in her neck) and undergoing multiple tests.
“By then, she had developed such a severe bottle aversion. Drinking meant pain for her. It was heartbreaking.”
Food Allergies and Rare Diagnoses
After five weeks, the family was discharged. But the challenges didn’t end. “We introduced solids and gave her butternut. She vomited the entire night. That’s when doctors discovered she had FPIES (Food Protein-Induced Enterocolitis Syndrome), a rare allergy that causes severe reactions to certain foods.”
Later, her doctors decided a G-tube was the best way forward. “When you start, it’s literally a pipe sticking out of her tummy for six weeks. Eventually, it’s replaced with a low-profile button, which is easier. She was only 4.5 months old.”
Life With a G-Tube
Today, her daughter drinks only about 30ml of her 180ml bottles – the rest goes through her tube. “We’re kind of pros now,” her mom says. “But it hasn’t been without challenges. The first tube caused infections and granulation, where the skin tries to close the hole. Still, she’s thriving now – rolling, almost crawling – it feels ‘normal’ again.”
On top of everything, she was also diagnosed with an immune deficiency, making her more vulnerable to gastro and respiratory infections.
Finding Strength and Building Community
“It’s been a journey. We’re clawing our way through 2025. But what keeps me going is wanting to share our story. I’ve found podcasts and stories from tubie parents in Australia and America, but very little from South Africa. One anesthetist told me there are tubies all over Cape Town. I’d love to find them – to build a community for support and shared ideas.”
Her message is simple but powerful: “You’re not alone. There are more of us out here. And together, we can support one another.”
This mom’s story highlights the resilience, strength, and fierce love it takes to raise a medically complex child. Behind every tube, every hospital stay, and every sleepless night is a mother doing everything she can to keep her baby thriving.
If you know of tubie communities – or if you’d like to help create a space for medically complex children online with Liora – reach out to us. This mom is searching for South African tubie parents to connect with, to find the kind of understanding, support, and kinship that can only come from those walking a similar path.
