Learning more about William

We've had many meetings with doctors over the last year. With each one we learn a little more about our baby bear. Naturally, these meetings are pretty hard to get through. They are always located in the hospital, which can be a bit overwhelming in itself. But they can also be nice, something we actually look forward to. The sights, the sounds, the smell - they bring us back to the days we still had him.

The hospital is an overwhelming place but also a place that houses such incredible memories and a strong connection to him. We remain hopeful that one day we will be back in the same hospital giving birth to our second child, William’s spirit right there ready to meet his little brother or sister. It makes us so happy to think about that day.

Last month we had a pretty big meeting with his doctors. It's difficult to verbally express to people what happened, so we thought we'd share on the blog.

The meeting went well overall. We learned that William’s anemia was likely due to a form of ineffective erythropoiesis where William was able to make red blood cells but was unable to use them properly. We listened patiently as the doctors explained how all the clues and characteristics of William led them to believe he had a rare red cell disorder - one that doesn’t fit into any category they have seen before. There is probably a genetic cause linking it all together, either recessive and passed down or “de novo” and seen for the first time in William.

One specialist used the whiteboard to draw how William’s red cells appeared under the microscope compared to how normal red cells look. They answered all of our questions and showed us compassion and care. It was clear that everyone involved investigated his case vigorously with much effort. They shared the pain of losing him with us, expressed how sorry they felt, and that takes courage.

At the end of the meeting we were the last to leave the room. We walked out clutching onto each other, emotionally exhausted, and just cried right there in the middle of the hallway until we were ready to walk again.

Although we wish we had a clearer picture as to what happened and more importantly why, we consider ourselves lucky in a way to have known about him on another level, to know how special he was.

He continues to amaze us. 

We also consider ourselves lucky to have so many experts as part of our team. We trust them and most importantly, we realized that they are not giving up. 

One of the doctor’s wrote to us after the meeting saying what a privilege it was to be of help. And one of the doctor’s promised to follow up in the future. We may be able to enter one or more research pipelines where scientists will look again, and again, until they find more patients with similar phenotypes as William’s and then reevaluate his case to learn more.

One doctor who took care of William after he died, told us in 25 years she has never seen any baby as unique as our little guy. We’re not sure what to think about that - we just know how much we love him - how much happiness he’s given to us.

We are now waiting for more specialized testing. Odds aren’t great, but maybe we will find a clear cut origin of his anemia. Maybe not. We will update everyone when we know more, most likely late fall. For now we are enjoying summer as best as we can and wishing fall would get here faster.

Thank you so much for all your support and hugs and prayers!

We are happy to be visiting more with family this summer and moving through grief one day at a time - with all of you right there with us.

xoxo
Liz and Tom