There’s something incredibly special about sitting with a family and hearing their story unfold. It’s a privilege I don’t think I’ll ever tire of.
Guatemala is a land of incredible contrasts.
Right now, many passes are still pretty muddy and dangerous to access due to the recent rains.
But while one direction from our town leads to lush, forest-covered mountains (prone to mud!), venture the other way and you’re met with desert landscapes, cactus-dotted roads, and different mountain ranges beyond.
It’s a beautiful, diverse country.
Last week, our journey led us to a new family whose precious son we had heard was diagnosed with unknown illness involving a “head surgery”.
Because this family speaks an indigenous language, not Spanish, they’ve been left largely in the dark by the medical community. The details of their son’s head surgery, or the “bones in his legs” surgery, were never truly explained to them.
When we arrived, we were welcomed and handed baby E’s hospital paperwork, hoping we could help piece it all together.
Our little friend had indeed had a shunt placed with a diagnosis of hydrocephalus, and surgery to help straighten his feet because he was born with spinobifoda, and has double clubbed feet. His mom, held him close and shared that because baby E was taken to the NICU at birth for these critical surgeries, she wasn’t able to breastfeed. Now, he relies on formula.
This isn’t an uncommon story here.
The medical system doesn’t prioritize breastfeeding or early bonding, very frequently advising mothers to just go buy milk when they mistake the early milk, clostridium as “looking weak”. This is a hinderance to the natural process between mother and baby, and harmful advice given by doctors unfamiliar with the basics of breastfeeding.
This situation highlights the real need for compassionate care and education that truly reaches every family, in every language.
A community leader shared that baby E’s family works hard– but in agriculture, there is simply not much money. This is an incredible mom to choose to keep her son with special needs, and strong father to work to support their child.
As we spent time with them, learning about their precious baby, the weight of their journey became incredibly clear.
We helped explain his diagnosis, but the road ahead is steep. He needs formula, constant medical supplies, and monthly trips to Guatemala City – a daunting 6+ hour journey for them each way.
What’s even more heartbreaking is navigating the medical system. They face not only the physical distance but also language barriers, needing to hire a translator because many doctors simply won’t engage with those who only speak a Mayan language.
Even with a translator, they often face discrimination – being seen as “from the villages, indigenous, uneducated” – which diminishes their rights and care even more than other patents.
His mom shared a poignant detail: she was instructed to straight catheterize him every three hours for urine. Imagine performing a sterile procedure, on a reed mat, on the floor, without gloves. It’s almost unimaginable for us in the medical community from developed nations, but this is their reality for all his medical care at home.
Our little friend is just a few months old and has already endured more than many face in a lifetime. It’s hard to hear, and harder still to reconcile that his life will never be what it could have been had he been born in a developed nation with children hospitals, specialists, therapy, and programs to aid in the costs.
In conversations like these, we don’t just speak; we listen.
We listen because the language requires patience, waiting for translations, but more importantly, we listen because this family needs to be heard.
This mom needs to vocalize the frustrations and challenges of having a baby who isn’t what she expected, of confronting a healthcare system that is scary and unkind.
So we listen.
We will be listing quite a bit more often as we continue to visit and encourage the family. We are helping by covering baby E’s formula for a year so the family can concentrate on other costs.
Would you consider helping as well?
We have created a campaign to cover baby E’s formula for 1 year.
As we visit, we will continue to grow a relationship with this family, and we will listen more. We will listen to physical needs, and we will listen to their spiritual needs as well. Sometimes God brings about incredible things out of challenging situations.
Please join us in praying for baby E’s journey, and for his family.
And pray for us as we continue to listen to our families.
Their resilience inspires us and underscores the vital importance of our mission to advocate for and support our families.
