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2016 – Turns it out it *was* our year

By 27th July 2017April 14th, 2022No Comments

It’s weird to write this on the other side…

In 2016 I did get pregnant. I found out in January. Ironically not long after I posted that last post. And just so it’s clear – it was a spontaneous pregnancy. Not an IVF one. We still have those six, beautiful frozen little blastocysts, and after all four hard, expensive rounds, we conceived *naturally*.  What. The. Hell.

I found it really really difficult to settle in the pregnancy. I was convinced that my infertility had caused some chromosomal issues. So, we did an amnio, and we had to wait till I was 16 weeks, and another three weeks for the results. We found at 19 weeks that our little baby was chromosomally perfect – and that he was going to be a little boy! 

We were over the moon and felt finally okay to tell people at 20w.

Here’s the kicker though – despite being chromosomally perfect our little guy inherited an incredibly rare metabolic disorder called Nonketotic Hyperglycinemia. Unbeknown to us, Zee and I are both carriers.

We spent the first two weeks of our baby’s life in NICU praying he would live. We spent the next two weeks praying he’d breathe by himself and we’d be able to take him home.

 And sure, we were able to take him home. For about three weeks before the seizures kicked in. After that, it was three weeks at the hospital, three weeks in intensive care and two months in hospice on end of life care.  End Of LIFE care.

Oh, my beautiful baby. 

It’s been a heartbreaking, horrid time. We were, eventually, able to come home. And while things aren’t rosy (oh hey seizures, and profound developmental delay and constant trips to the hospital) every day that our gorgeous little guy is with us is a good one. 

I blog more openly about our journey over at  We’re fundraising for a cure at, so if you could spare $10, that would be amazing. 

I probably won’t be blogging here as frequently, but I wish you luck, hey. And hope. Got my fingers crossed for your BFP. Maybe this year will be your year too! 


Sae x

PS – Awkwardly, my name isn’t really Sae. It’s Elly. And Zee’s name isn’t Zee, it’s Sam. Sae is an acronym we use sometimes – Sam and Elly. I guess this is it – we’re out! x

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