Tuesday, December 22, 2009

Lessons from our baby

"What are Brandon's chances? What are the statistics? What's the survival rate? How likely are you to find a bone marrow match?.............."

The numbers, statistics and probabilities can drive you crazy.
And at the end of the day, what do they really mean? What does it mean for Brandon?

My response - I don't give a s--t about numbers. And here is why...

In a previous post I talked about my own illness last year. But I was not the only one going through medical trauma. Our poor baby was battling his own demons.

As routine in a high risk pregnancy (at the time they did not know about my blood disorder and what it was doing), we had a scheduled ultrasound every week.

One day (at about 5.5 months pregnant), they noticed that the fetus had a leak from his bowels; there was probably a rupture. This could mean many things (some not serious at all) and so our Dr continued to investigate. As the week went by my own symptoms got worse (heart failure, exhaustion, major water retention).

At about 27 weeks the Dr. called us in and said "Given the combination of ultrasound results and your symptoms, we are pretty sure your baby has CMV".
"What is that?"
"It is a virus that attacks the fetus and unfortunately he will be born blind, deaf and mentally disabled. You need to start thinking about what you want to do."

Brandon and I did not even have to discuss it - we will abort the fetus. But - "How sure are you?".

"I am 99% sure. And the only reason I am not saying 100% is that I am not that arrogant."

For those who know Brandon and I well enough, you know that we dealt with this in the way we deal with anything else --- This is something out of our control. We can't do anything about it, so we will deal with it....TOGETHER.

Just one final amnio test to validate these horrific findings....

On August 28 we got the following email (direct copy):

Amniotic fluid is neg for CMV on TAlly Grajcer.
I will cancel head Ultrasound for next thu
This is surprising but good news.
We need to now check out all other causes of the combination of ultrasound findings, by excluding both abnormal chromosomes and cmv, the worst causes are behind us.

There you have it.
A 1% chance that the baby would be ok. 1 percent!!!!!

When our baby was born we named him Koby Ness. Ness in Hebrew means miracle, because he truly was our miracle!

Today he is 14 months old, weighs as much as his 3-yr old sister, has the best sense of humour, is a boy in every sense (we call him bruiser) and is a loving cuddly toddler.

So I don't care what the numbers are for Brandon. They can be 80%, 50%, or even 1% - as long as he is IN that success group!

Brandon's middle name in Hebrew is Chaim, which means 'life'.

Let him take a page from his son's own journey, beat whatever odds are provided and make his name his destiny.

Thank you

Wanted to thank everyone for your notes, emails, calls and continued support.
I read the letters to Brandon today and I can see he is so happy to know everyone is thinking about us and praying for him.

Thank you for myself and the kids too for the quick food response of friends and fellow Adath parents who have organized a dinner schedule....it helps not to have to worry about meals for the kids.

Brandon, Taly, Dana and Koby

Dec 22 Numbers

Hgb - 78 (quite low so he is getting a blood transfusion right now)
Platelets - 20 (low but expected)
WBC - 0.2

Brandon slept last night and did not throw up so that is great.
This morning he had a few bites of muffin - first food in about 1.5 weeks!!!!