If I had a dollar for every time told me a story and prefaced it with “ of course it’s nothing compared to what you’ve been through but…” I’d probably have enough to fill a piggy bank by now.Read More
1 in 4. Those are our chances of having a baby with NKH.
Nonketotic hyperglycinemia, or NKH, is a very rare genetic disorder, caused by a defect in a child’s genetic coding which means that they can’t break down Glycine. Glycine is an amino acid that is found naturally in our bodies and we need it to grow and develop properly, but when it’s not broken down and accumulates, it effectively becomes poisonous. The result is severe disruption to movement and development, brain damage, seizures and muscle weakness. Children with NKH tend not reach milestones past those reached by a regular 6-week-old infant. It’s not pretty. It’s terminal and currently there’s no cure.Read More
I can’t tell anyone how to cope with baby loss - everyone’s different and there’s no right or wrong way - and there’s also no right or wrong way to help someone through baby loss. You just have to be there. Even in silence, just being there is helping.Read More
The last post I published was a tour of the beautiful nursery we designed for the impending arrival of our first born but sadly, his life story didn’t have a happy ending.Read More