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Living with NKH

There is a theory that according to the laws of aerodynamics, Bumblebee’s shouldn’t have the ability to fly. But they don’t know that, and they do. Similarly, NKH parents are told their babies won’t live, but they do.

Which is why the NKH community has taken on the symbol of the bumblebee. And so goes the introduction into the world of NKH.

It’s unexpected. And fraught with hope and love and grief and fear.

Welcome to the club, hey. It’s not a club any of us join by choice, but there are enough of us out there to ensure we’re not battling the NKH day-to-day alone. It’s not the life we thought we’d have. It’s not the path we imagined through pregnancy, but here we are. We’re managing.

The best advice we were ever given is “Don’t live the diagnosis.”

Which is to say, if life is to be short and fragile – waiting for the end is not the kind of life we wish to give our children. So, whenever possible, don’t live the diagnosis. Do more than wait for the inevitable.

For the Newly Diagnosed

NKH Progression

NKH Day – May 2nd


Participating in Research

Charities and Parent Groups

Support and Benefits

Skull and Plagiocephaly

Sensory Toys + Play

Participating in Research

Sleeping Arrangements

Managing Illness

Diet and Feeding Methods

Managing your Medical Teams


Vitamins and Supplements

Coping with Stress

Toileting and Pooping

Seating and Chair Support

Braces and Spinal Support

Bathing Support