When we finally saw a difference: Maud's story

Part 3: Maud's story

Written by Iris Prins, founder of Flomea Care and Maud's mother.

After the feeding tube was successfully placed and we switched to formula for a possible cow's milk allergy, we saw a small improvement. This formula is easier to digest than standard formula, so Maud seemed to tolerate it a little better.

But she never truly became comfortable.

With every feeding, we saw the same pattern. The first 30 cc often went down well, but then it stalled. It seemed as if her stomach was holding back the food. Sometimes only a trickle would pass, and she often brought the food back up.

Fortunately, thanks to the feeding tube, she was at least getting some nutrition. Slowly, some color returned to her face, and we won the battle against dehydration. But the crying continued. The restlessness persisted. And the amounts of food she could tolerate remained minimal.

Meanwhile, various tests were conducted and biopsies taken. Fortunately, no major abnormalities were found. Only her protein levels were closely monitored, but even that was not immediately concerning at the time.

After a week in the hospital, we were allowed to go home. Not with answers, but with a baby on a feeding tube.

What followed were months of uncertainty.

Month after month, we lived at home with the feeding tube. We continued to offer food in all sorts of ways, as it was thought that Maud might have developed a food aversion. So we kept trying. Different bottles, different times, different ways of offering. All in the hope that she would eventually start drinking on her own again.

But the crying continued. The restlessness persisted. And the feeding challenges continued to dictate our daily lives.

After months of searching, trying, and hoping, our treating gastroenterologist came up with a new proposal.

She prescribed medication used for people with gastroparesis, or delayed gastric emptying.

And honestly, we didn't expect what happened next.

Within 24 hours, we saw a difference.

For the first time in a long time, Maud seemed to feel better. By then, she was already 8 months old, and all that time we had lived between feedings, crying spells, hospital appointments, and uncertainty.

She was calmer, more comfortable, and seemed to have less discomfort during and after feedings. It wasn't a magic bullet that solved everything immediately, but it was the first time we saw real improvement.

Because Maud responded so positively to this medication, our gastroenterologist decided to conduct further research. Using contrast fluid, they examined how food moved through her stomach and intestines.

And finally, an answer emerged.

The examination revealed that Maud had delayed passage. This means that food moves much slower through her gastrointestinal tract than normal. In addition, they saw that her stomach was horizontal. This in itself does not have to be a problem, but in combination with her complaints, it could contribute to her discomfort.

For the first time, pieces of the puzzle fell into place.

We weren't there yet, but after months of searching, doubting, and fighting for answers, we finally had an explanation for some of our little girl's complaints.

In the next parts, I would like to take you further into our/my story as a mother of 3 sweet daughters and what I would like to mean for children who have a condition that needs funding, and how all these experiences ultimately formed the basis of Flomea Care.

Would you like to discover more about Flomea Care and Iris's story?
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