No cleft denied

Our Story

Our son Nissim was diagnosed at our 20-week sonogram with a bilateral cleft lip and palate. What should have been a routine appointment turned into an hour of anxiety, doctors walking in and out, and a moment that changed everything. We were devastated, but we were also determined to give him the best care possible.

We educated ourselves. We found the best surgeons, the best hospitals, and the best treatment plan. Thankfully, Nissim was otherwise healthy. When he was three months old, he had his first surgery to repair his cleft lip. The surgery went well, and we were relieved.

At nine months, it was time for his palate repair.

This is not a cosmetic procedure. This is a complex reconstruction of the roof of the mouth so a child can eat, speak, and breathe properly. It requires general anesthesia. It requires precision. And it requires careful post-operative monitoring.

Our surgeon recommended an overnight hospital stay. Standard protocol. A baby who just had the roof of his mouth reconstructed needs to be monitored for bleeding, airway complications, and pain management.

Our insurance company, through an individual plan and not employer coverage, denied the overnight stay.

They said it wasn’t medically necessary. They said we could take him home the same day. They said a nine-month-old baby, under general anesthesia, after major reconstructive surgery inside his mouth, did not need to be monitored overnight in a hospital. We appealed. Our surgeon appealed. We submitted documentation, medical justification, and everything they asked for. They denied it again.

No parent should have to worry about how to pay for their child's recovery from a condition they were born with.

They gave us strength when we felt lost.

Ray's Mom

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This Isn't Cosmetic. This Is Medical.

Supporting families through advocacy, stories, and action.

What is a cleft palate?

A cleft palate is a congenital condition where the roof of the mouth doesn't fully form during pregnancy. It affects a child's ability to eat, speak, hear, and breathe. It is not cosmetic. It is a medical condition that requires surgical intervention.

Why is surgery necessary?

Without surgery, children with cleft palate cannot eat properly, develop speech, or avoid chronic ear infections. The surgery reconstructs the palate so the child can function normally. This is not elective. This is essential.

Insurance companies often approve the surgery itself but deny post-operative care, overnight monitoring, or follow-up treatments. They claim these are "not medically necessary" despite surgeon recommendations and medical standards.

What do insurance companies deny?