Imagine welcoming a perfect newborn, only to be told days later that something invisible, something terminal, lurked inside her. That was my reality. My daughter’s diagnosis (MMIHS) was an avalanche of fear, medical interventions, and a clock that ticked louder with every moment.
Doctors gave no promises. Most children with this condition, they said, don’t survive past their toddler years. What followed was a journey not just of survival, but of tearing up the rulebook and living in defiance of the odds.
What Survival Meant Back Then
At first, my daughter thrived on breastmilk. It was only when solids entered the scene that chaos erupted, distended belly, relentless constipation, surgeries stacking up like poorly placed dominoes. Even the smallest misstep in her diet caused her gut to rebel.
The “standard” food pyramid offered no salvation. Bananas, blueberries, and gluten-free bread, none were innocent. Each well meaning attempt at a ‘healthy’ meal triggered disaster.
Trips to the hospital became routine. Ambulances. Nights of breathless vigilance listening for coughs, vomiting episodes, or the ominous silence that sent adrenaline spiking. Medical jargon soon turned familiar: TPN, intestinal failure, organ transplants looming on the horizon.
And then, quietly, a door cracked open.
The GAPS Diet in the Middle of the Storm
Hope came wrapped in an unlikely package: the GAPS diet. Specifically, the no plant version, an even more stripped down approach for those so fragile, even garlic could tip them into crisis.
We kept it simple:
- Pasture-raised chicken
- Rich broths simmered from bones
- Tender organ meats
- Butter and raw egg yolks for vital fat
- Later, grass-fed beef, slowly reintroduced
No fancy sauces. No condiments. Just food in its raw, powerful simplicity.
Beef didn’t work at first. The body’s response was overwhelming. So we started softer. Slowly, methodically, we rebuilt her from the inside out.
Time became an ally rather than an enemy. Within a year, beef reappeared on the menu. And with it, a child who no longer lived tethered to an IV pole.
What Healing Looks Like
Today, my daughter is a blur of motion, a five-year-old running wild at the playground, pedaling her bike under the sun, swimming without the shadow of central lines or hospital stays.
It’s not glamorous. The diet is simple, almost spartan: homemade G-tube blends of bone broth and organ meat, punctuated with raw egg yolks and gobs of butter. String beans and the occasional berry sneak into her siblings’ plates. I favor lamb, keeping histamine intolerance at bay.
Not fancy. But alive. Thriving.
What the Limits Reveal
Healing wasn’t just physical. It reshaped our family. Gratitude, once a nice idea, became a way of breathing. When you’ve watched your child fight for every ounce of life, even the smallest joys become amplified.
- A warm meal at home.
- A declined credit card, not a crisis, but a memory of worse days.
- The simple fact of not sleeping on a cot in a hospital room.
What I Found in the Dark Now Lights the Way
I didn’t just stop at saving my daughter. I wrote a book, ‘Dying to Thriving’ capturing every misstep, every breakthrough. My work now touches families across continents, offering them a map I had to sketch myself in the dark.
For some, it means a child leaving TPN feeds behind. For others, it’s the first whisper of bowel motility after a lifetime of none. I’ve seen miracles. Not the lightning-bolt kind, but the slow, relentless sort that feels like stubbornness dressed as grace.
Conclusion
Healing isn’t always flashy. Sometimes, it looks like eating burger patties day after day. Sometimes, it’s fermented sauerkraut juice bubbling quietly in a corner.
We live in a time that craves instant results, but my daughter’s story is a reminder: real healing is often unvarnished, repetitive, and grueling. But it’s also glorious. When the experts shook their heads, we chose not to listen. We chose life. Maybe that’s the real miracle.