A Non-Political, Political Post About Spina Bifida [Michigan HB 4584]

I imagine most people right now think I’m about to go into a post about the current situation with the Affordable Health Care Act, pre-existing conditions, and all that jazz. No. Not today. Not here. That topic is so overwhelmingly difficult for me to process, and painful to think about, that part of me wants to just wake up one day and it will all be a bad dream.

No, today I want to talk about a bill that has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs YOUR help!

You follow Colten here four plus years later. You know what Spina Bifida “looks like”. If you started with us early in our journey, you know that what Colten does today is absolutely NOT what we ever expected him to do when he was born back in 2012. We were given grim outlooks. Complete lower body paralysis. Wheelchair use full-time outside the house. One doctor even said we could leave him to die. Most of you know that information already from either following our story over the years or from jumping into our lives anytime since and hearing me spew about it – because I do. Every chance I get. I repeat that story because we are proof that doctors are providing families with outdated, inaccurate information. I still have never worked up the nerve to tell that doctor in Lansing what I want to tell him. Partly because at the end of that day, we transferred Colten to Mott and it was the best decision.

But the reality is, we aren’t the only ones that got this type of information and we aren’t the last. Too many families get this outdated, inaccurate information at 18-20 weeks. They are vulnerable and having to make a decision – whatever it is: abort? fetal surgery? post-natal surgery? What is even scarier is that ultrasounds can be wrong. There have been people given a diagnosis, and then the child is born with NO Spina Bifida of any form. So information needs to be accurate. It needs to be current. Kids with Spina Bifida and adults with Spina Bifida don’t have easy lives. No one does. But let’s be clear about one thing: they do have high quality, enjoyable, successful lives.

I’m veering away from the point of this post, somewhat. I’m not here to retell our story to you, I’m here to ask for you help. Let me try again.

Today I want to talk about a bill that has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs YOUR help!

If you live in Michigan, please give me TWO minutes of your time. Literally, it will not take you more because I’ll give you text to copy and paste, below my letter. And I’m supplying you a list of local representatives before the letters so you can find yours! (Mad props to Adel for this work… thank you lady!)

If you’re so inclined to read before you commit, here is a link to the entire bill. This bill is not republican, democrat, or any party. It is PRO-INFORMATION. We are not trying to encourage or discourage abortions, adoptions, or births of any particular nature. We are not touching anything to do with insurance. We simply want ACCURATE, UP-TO-DATE information shared with families that find themselves with a Spina Bifida diagnosis.

Below are THREE resource sections:

  1. List of Michigan legislators that are members of the MI House Committee on Health Policy. We want their support of this so it moves forward. This is the SECOND year this has been in front of them and it stalled last year.
  2. A copy of what I sent my legislator
  3. Text for you to use so you can literally copy and paste it to your legislator. Feel free to edit as you see fit, but I’m giving you something easy here.

Thank you! If you can take a few minutes and do this, thank you! We greatly appreciate it and need all the support we can get here. There was a lot of positive support already for this the last time it was in committee but it stalled out. We need more backing and more people saying, YES, this is what needs to happen. Hopefully you are one of those people.


SECTION 1: LEGISLATORS

Contact these legislators (Members of the Michigan House Committee on Health Policy) today to share your story and to indicate your SUPPORT of Michigan HB 4584:

Hank Vaupel (R) Committee Chair, 47th District
CONTACT Rep. Vaupel: http://gophouse.org/representativ…/southeast/vaupel/contact/
http://gophouse.org/representatives/southeast/…/districtmap/
Howell area

Jim Tedder (R) Majority Vice-Chair, 43rd District
CONTACT Rep Tedder: http://gophouse.org/representativ…/southeast/tedder/contact/
http://gophouse.org/representatives/southeast/…/districtmap/
Clarkston area

Joseph Graves (R) 51st District
CONTACT Rep Graves: http://gophouse.org/representativ…/southeast/graves/contact/
http://gophouse.org/representatives/southeast/…/districtmap/
Fenton area

Daniela Garcia (R) 90th District
CONTACT Rep Garcia: http://gophouse.org/representatives/westmi/garcia/contact/
http://gophouse.org/representati…/westmi/garcia/districtmap/
Holland area

Jason Sheppard (R) 56th District
CONTACT Rep Sheppard: http://gophouse.org/representat…/southeast/sheppard/contact/
http://gophouse.org/representatives/southeast/…/districtmap/
Petersburg/Milan area

Julie Calley (R) 87th District
CONTACT Rep Calley: http://gophouse.org/representa…/…/calley/contact-rep-calley/
http://gophouse.org/representativ…/southwest/…/district-map/
Portland/Hastings area

Diana Farrington (R) 30th District
CONTACT Rep Farrington: http://gophouse.org/…/diana-farring…/contact-rep-farrington/
http://gophouse.org/…/southe…/diana-farrington/district-map/
Sterling Heights area

Roger Hauck (R) 99th District
CONTACT Rep. Hauck: http://gophouse.org/representati…/…/hauck/contact-rep-hauck/
http://gophouse.org/representat…/central/hauck/district-map/
Mt. Pleasant area

Pamela Hornberger (R) 32nd District
CONTACT Rep. Hornberger: http://gophouse.org/…/so…/hornberger/contact-rep-hornberger/
http://gophouse.org/representati…/…/hornberger/district-map/
New Baltimore/Richmond area

Bronna Kahle (R) 57th District
CONTACT Rep. Kahle: http://gophouse.org/representati…/…/kahle/contact-rep-kahle/
http://gophouse.org/representativ…/southeast/…/district-map/
Adrian area

Jeff Noble (R) 20th District
CONTACT Rep. Noble: http://gophouse.org/representatives/southeast/noble/contact/
http://gophouse.org/representativ…/southeast/…/district-map/
Plymouth area

Winnie Brinks (D) Minority Vice-Chair, 76th District
CONTACT Rep. Brinks: http://housedems.com/contact-rep-brinks
http://housedems.com/district-76-map
Grand Rapids area

Andy Schor (D) 68th District
CONTACT Rep. Schor: http://housedems.com/contact-rep-schor
http://housedems.com/district-68-map
Lansing area

LaTanya Garrett (D) 7th District
CONTACT Rep. Garrett: http://housedems.com/contact-rep-garrett
http://housedems.com/district-7-map
Detroit area

Sheldon Neeley (D) 34th District
CONTACT Rep. Neeley: http://housedems.com/contact-rep-neeley
http://housedems.com/district-34-map
Flint area

Abdullah Hammoud (D) 15th District
CONTACT Rep. Hammoud: http://housedems.com/contact-state-rep-abdullah-hammoud
http://housedems.com/district-15-map
Dearborn area

Kevin Hertel (D) 18th District
CONTACT Rep. Hertel: http://housedems.com/contact-state-rep-kevin-hertel
http://housedems.com/district-18-map
Eastpointe/St. Clair Shores area


SECTION 2: MY LETTER

Dear Rep. Hertel,

I am writing to you today to encourage you to support House Bill 4584. In all of the medical/health politics today, this bill is not focusing on any political party – simply providing families with up-to-date, evidence-based, written information about Spina Bifida. It strives to get contact information regarding support programs and services to expectant and new parents of children with Spina Bifida.

This bill has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs your help!

Seems like this sort of bill wouldn’t be necessary. Unfortunately, many parents are given inaccurate, outdated information upon diagnosis. I know – we were given outdated information over four years ago. We were even told we could leave our son to die.

The public trusts medical professionals. It is too dangerous for the future of our country to have those professionals sharing inaccurate information. Babies are being aborted or given up for adoption due to grim outlooks, or even blatant misdiagnoses that the family cannot come to grips with. It needs to stop. This isn’t about abortion, adoption, or insurance. This is simply about getting ACCURATE, UP-TO-DATE information to families in a very vulnerable place so they can make the best decision for their family.

We hope you can support this. I am happy to discuss this more via email, phone, or in person.

If you are interested in what Spina Bifida really looks like, I invite you to read through my son’s blog:
http://coltenrobert.com

Thank you for your time today!

Kathleen Pojeta


SECTION 3: LETTER FOR YOU TO COPY/PASTE TO YOUR LEGISLATOR

Please look for the bold, capital letters – replace that with your information, including your own name at the end.

Dear Rep. YOUR-REPRESENTATIVE’S-NAME,

I am writing to you today to encourage you to support House Bill 4584. In all of the medical/health politics today, this bill is not focusing on any political party – simply providing families with up-to-date, evidence-based, written information about Spina Bifida. It strives to get contact information regarding support programs and services to expectant and new parents of children with Spina Bifida.

This bill has been introduced in the Michigan House Committee on Health Policy. And the Spina Bifida Community needs your help!

I know a little boy, Colten, who was born with Spina Bifida. His parents were one of the many given inaccurate, outdated information upon diagnosis. They were even told they could leave him to die after he was already born. Thankfully, they didn’t listen to the negative, found a better support system, and today, have a vibrant, healthy, smart, determined four-year-old! You can learn more about Colten here: http://coltenrobert.com

The public trusts medical professionals. It is too dangerous for the future of our country to have those professionals sharing inaccurate, outdated information. Babies are being aborted or given up for adoption due to grim outlooks, parents are missing opportunities for fetal surgery because of outdated medical information, and there are even cases of blatant misdiagnoses that the family cannot come to grips with. It needs to stop. This isn’t about abortion, adoption, birth style, or insurance. This is simply about getting ACCURATE, UP-TO-DATE information to families in a very vulnerable place so they can make the best decision for their family.

We hope you can support House Bill 4584. We certainly do, and we know Colten’s family does too!

Again, if you are interested in what Spina Bifida really looks like, I invite you to read more about Colten: http://coltenrobert.com

Thank you for your time today!

YOUR NAME HERE

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