Jaylani

Our daughter, Jaylani Faith, was just one month old when our world changed. What was supposed to be a routine pediatrician check-up turned into the beginning of a life-changing journey.

At every visit, we noticed her head was growing quickly. Though babies do grow fast, her head measurements kept climbing beyond normal. I also mentioned something I’d observed: her eyes would often appear to be looking downward in a way that didn’t feel right. At the time, I had no idea what “sunsetting eyes” meant, but I trusted my instinct and brought this up with her doctor. Her pediatrician listened carefully, examined her soft spot, and found a bulge. That was the moment things shifted.

We were immediately sent to the local children’s hospital. The pediatrician even called ahead so they would be ready when we arrived. An MRI confirmed our fears; a massive buildup of cerebrospinal fluid (CSF) was putting dangerous pressure on Jaylani’s brain. She was diagnosed with congenital hydrocephalus.

Jaylani was rushed by ambulance to the main children’s hospital in downtown Austin. There, we met the neurosurgeon and his team. We were young, first-time parents, terrified and overwhelmed, but we were determined to fight for our little girl.

The medical team presented us with two surgical options:

A shunt, which involves placing a device in the brain to divert excess fluid to another part of the body. We were told it’s a common treatment but often comes with lifelong risks, including blockages and infections.

The other option was an endoscopic third ventriculostomy (ETV), a procedure where a small hole is made in the floor of the brain’s third ventricle to allow CSF to flow more naturally. We were told this option was likely to be less invasive long-term, but in babies under 6 months old, it only had about a 50% success rate.

We were faced with an impossible decision. Go with the more common route that could mean repeated surgeries for the rest of her life, or take the risk with the ETV in hopes of giving her a future without lifelong medical interventions. We chose faith over fear. We chose the ETV.

That night, we prayed harder than we ever had. We asked our families to pray, too. We held onto hope with every ounce of strength we had. The next morning, Jaylani was taken into surgery.

When we saw her after surgery, it was as if we were looking at a brand-new baby, but in the best way possible. Her sunsetting eyes were gone. She was more alert, smiling, making sweet baby sounds, and showing a level of awareness we hadn’t seen before. Her soft spot was flat again, a sign the pressure had been relieved.

The ETV was a success.

Since that day, Jaylani has blossomed. She smiles more, engages more, and her development continues to give us joy and strength. We know her journey isn’t over, and we’re still learning every day, but we are so thankful for the decision we made and the faith we held onto when everything felt uncertain.

To any parents going through this, you are not alone. We know how terrifying it is to face these decisions, especially when it comes to something as precious as your child’s future. Trust your instincts, ask questions, and don’t be afraid to take the risk if it feels right for your child.

We took the risk, and today, our daughter is thriving.

Don’t lose faith. Don’t lose hope. This journey is hard, but it’s also full of miracles.

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