Today was rough. I’m not gonna lie to ya. The true realities of our pre-diagnosis has really started setting in.
Some (statistical) facts:
1 in 7,000 are born with this. Considering the average of the last few years of US recorded births is in the 4 million range…this gives us an approximate number of 550 babies per year in the US. This includes still births (sometimes called miscarriages) that occur in the 2nd and 3rd trimesters – which is after 13 weeks gestation.
Of those 550, about half of them make it to term – or 38-40 weeks gestation. So, around 275.
Of those 275, half of them will be still born – usually because of the severe heart defects that can’t hold up to the pressures of labor and delivery. Around 137 of them or so.
Of the 137 or so that do live through birth, almost all of them go straight into NICU care.
After that, less than 13 of them will be alive at the time of their first birthday.
The median survival time is 14.5 days.
This is Trisomy 18, or Edwards Syndrome.
We don’t have our official diagnosis yet; we’ll be doing a blood test for that in a couple of weeks when enough of baby’s DNA is in my blood to register on the testing scale. But based on the severe swelling (or nuchal translucency) surrounding baby, and the entire intestine system that is developing outside of the baby’s tummy, instead of inside, the specialist we’re seeing is giving us his best guess of Trisomy 18 on this one. And he’s assuming we’ll be in that 50% that don’t make it to term. In fact, he’s already made arrangements for delivery options for me in the next few weeks, should I go into labor.
Dealing with the unknown is rather unbearable at times. (How do you make any sorta plans for anything?!) And the amount of mental and emotional energy needed to stay positive and do the normal tasks is enormous. I found myself
raising my voice, yelling, at my girls alot today. My youngest was crying about not being able to find her blanket “I just want my blanket, Mommy!” she said. – all I could do was begin sobbing with a “Yeah? Well all I wanted was a healthy baby.” We were both in tears for awhile together. Crying out both of our very real hurts and longings, tears rushing as freely as the rain from the late summer thunderstorm outside our home.
Don’t get me wrong. We have our God. We have His peace. We have friends praying. And we have a strong family. But I’m not Ok with this. It’s not easy. All I know is that, “I can do all things through Christ who gives me the strength”.
Feel free to stick to this journey with us. And feel free to not. I wouldn’t blame you at all if you don’t. For those that do, though, I hope beyond all odds that it will have its moments of joy. But I’m sure most days will be full of tough decisions, painful challenges, and dim outlooks.
I can only hope that someone somewhere will get some sort of blessing out of what our God does for us and our little baby in all of this.
I cried a lot today. But the tears seemed to help wash away a lot of the fears and uncertainties and sorrows – tomorrow is a new day. And we can’t wait to celebrate it with our little one. Because, like we said from the beginning, every day is a precious gift. And we’re choosing to celebrate each one of those days.
Rick Santorum with his little full Trisomy 18 daughter, Bella, who is 3 years old.