I’m just full out copying this from Nat’s blog. I’m doing it for Devin. I’m not much for political activism, but I want to spread this word.
So you know I’m rather passionate about spreading awareness. Let’s make sure the lawmakers understand that this is an issue they cannot ignore! In addition to the steps below, we need to write in to our representatives in Congress and tell them that YES we need this bill to pass. WE NEED better research on why stillbirths happen. This is the only way we’re going to figure out how to prevent stillbirths them from happening. In this society, with all our technology, all our fancy machines, all our knowledge, 1 in 115 babies DIE between their 20th week of pregnancy and birth. This is unacceptable. We need to do better than that.
October 15th is National Pregnancy and Infant Loss Remembrance Day in the United States. More than 25,000 children are stillborn in the United States every year leaving mothers, entire families and communities devastated. Estimates of the rate of occurrence of stillbirth make it at least as common as autism.
Stillbirth is not an intractable problem. Greater research would likely significantly reduce its incidence, but good research requires good data. H.R. 5979: Stillbirth Awareness and Research Act is under consideration by Congress. This proposed bill would standardize stillbirth investigation and diagnosis, thus providing more data for the needed research. Better research means fewer children born still.
On October 15th, remember the thousands of unfinished children lost and the families who remain to grieve them. Honor them by taking action. Let’s help pass H.R. 5979.
Step 1. Use Your Blog to Enlist Others-Copy the contents of this entire post and publish it on your blog immediately.
GOAL: Enlist 10 of your readers to spread the word
Step 2. Use Your E-mail to Enlist Others-E-mail 5 bloggers and ask them (nicely and in an unspammy way) to publish these action steps on their blog. Consider contacting celebrity bloggers, political bloggers, medical bloggers, or bloggers who are not part of your reading community.
GOAL: Enlist 3 bloggers outside of your normal blog sphere to spread the word in other online communities.
Step 3. Help Pass the Stillbirth Awareness and Research Act-By October 15th, publish a post on your blog supporting H.R. 5979 Stillbirth Awareness and Research Act. For maximum impact, title your post: “Stillbirth Awareness and Research Act.”
GOAL: 1,000,000 Google results on October 15th when that term is searched for. Currently, Google only returns 20,400 pages – most of which have nothing to do with the bill.
I didn’t know, when I joined an online forum for moms due with babies in April 2008, that there was a dark cloud overhead. One little boy was born quite premature and passed away a few days later. Then Devin passed. Zac was born with a congenital heart defect, and while he spent months fighting, going through surgeries, and finally enjoying time at home, he lost his battle.
And then there’s Maggie.
I think I’ve spoken of Maggie once before. She is a little girl born to a friend whom I first met in my group of moms with kids born in July 2006, then who joined me due with a baby in April. After going overdue, Maggie was born with “something not quite right,” and when they looked closer they learned she had a genetic defect called Trisomy 18. Her family got her through the NICU and brought her home knowing that her days were numbered. Many babies with Trisomy 18 don’t make it past their first couple months, if they are born alive at all.
Maggie spent almost 5 months with her family before passing away this weekend. She was a peanut, spending most of her life around 6 pounds, but was a joy to her family. They could use some thoughts and love right now; whether or not they knew it was inevitable, it’s never easy to lose a child. I’m so glad they had 5 months with her.
Here’s hoping this is the last time I post about sorrow in this group of ladies. I’m pretty sure we’ve had enough.
Eric got a toy from his grandparents this past weekend for his birthday. Of course, being the horrible gift spoilers we are, we gave it to him yesterday. (All my fault!) From it came absolute proof that English is one messed up language. I feel for anyone learning it as a second language.
“A says ay, and A says ah. Every letter makes a sound, A says ay – and ah!”
“C says see, and C says sss. Every letter makes a sound, C says see – and sss!”
“E says ee, and E says eh. Every letter makes a sound, E says ee – and eh!”
Yeah, I can’t see the confusion there at all… It’s amazing any of us learn to read at that rate!
In other news, I’m getting very tired of bad news coming up about babies. It’s been a rough one for people I know! It’s always been out there, of course, but lately people I know rather well from my moms community have been facing a lot of struggles. I’m sharing them all here in hopes of some positive energy being sent out to all of them.
Baby Maggie is part of my April due date group. She was born with Trisomy 18, a chromosomal disorder that strikes at complete random and it absolutely horrible. Like us and CMV, they are playing the waiting game, taking one day at a time as a blessing before the other shoe drops. Unlike us, theirs is guaranteed to drop, and it will be fatal.
Baby Zac, also part of the April group, is still in the hospital after over a month now. He was born with a complex heart defect. His prognosis is good, but he has already had one surgery and will need at least one more. He has also been having some trouble eating, and his mommy is having a really hard time dealing with him being in the hospital and taking care of their one year old at home.
Baby Ava is another from our April group. (I tell you, this whole group was under a bad moon! Four major health problems, one stillbirth, and one preemie that passed away 3 days old.) She was born with a defect where part of her larynx obstruct her airway when she breathes. This is something she will outgrow in the next 6 months or so, but they need to get her through this first with constant monitoring and a few scares.
Baby Jude hasn’t been born yet, but at 18 weeks an ultrasound showed problems in his brain including enlarged ventricles. They are still ruling out some possible diagnoses, and CMV is a likely culprit. She contacted me through the community a little while ago asking about my experiences, and I’ve been following her journey since, hoping for the best.
Baby Luke was just born to a friend who is in my July 2006 moms group. He had problems that sent him to the NICU, and now faces a few minor problems that they are taking care of. He also has been diagnosed with Downs Syndrome, so their journey is just beginning.
If you can spare a few thoughts, prayers, or positive vibes, I’m sure they can all use it now. And, of course, Nat, Den, and Devin… I’d feel remiss if I didn’t mention my little adopted nephew. It will be 3 months on Friday.
I had come in this morning with my thoughts on Elmo and an entry that will probably get written later. Instead, I found a story that I think deserves some attention. A lot of attention. The news story is here, though it bounces back and forth between the actual story and some kind of ties to Germany, Nazis, and Hitler. Heather’s “Absolutely Ridiculous” post is not only appropriately titled, but does a very good job of explaining the situation.
In a brief nutshell, a woman is going to court and potentially being jailed for homeschooling her kids in Utah. A year ago, either the gremlins in the fax machine ate her paperwork to register her as homeschooling or the school district lost it. She was called on this – as she should have been – and despite producing her signed and notarized copy, charges have been pressed and she was told she had to enroll her kids in face to face public school and was not allowed to move out of the district. Online public school, which is recognized and endorsed by the state, was not good enough. A private school was not good enough.
Whatever happened to choice?
Now, I’m the first to admit, I’m not a homeschool person. I’ve never even considered it for our family. A couple years ago, I didn’t even understand homeschooling, and I’d be a little conceited to claim I do now – though I do understand it better than I used to thanks to some exposure, some friends, and some research. But this whole situation just baffles and astounds me. It’s a true sign of biased judges having far too much control. If homeschooling were illegal? OK, then it would make sense. But it’s not. That’s the beauty of the free world: as long as you follow certain procedures, you can choose public, private, virtual, home, whatever kind of schooling you want for your kids.
Well, unless you live in this district in Utah and your paperwork gets lost. Then you’re hosed.
I’ve said it before and I’ll say it again: the world needs to stop trying to legislate and dictate parenting choices. What works for me won’t work for everyone else. What works for you won’t work for everyone else. So please, give us all a break and just … stop.