HI everyone,
I'm full of anxiety about the Senate health bill but being that I'm in California with Senators who will vote against it, I've decided to reach out to family members in other states to ask them to call their own Senators. Here is a draft of the letter I sent:
Dear Family,
I'm writing because I want to talk to you about what's happening in DC around health care this week, how the bill would impact our son, Wolfie, and our family, and to ask for your help.
As you may know, when I was 20-weeks pregnant in 2014, Chris and I went to a routine ultrasound appointment and learned that our baby's heart had a serious defect. We were rushed into genetic counseling to discuss our options (including termination) and sent to a fetal cardiologist at Children's Hospital Oakland (CHO). We were given a diagnosis of a rare congenital heart defect and the possibility of a number of associated issues and then we were sent home to think about it.
Devastated and afraid, Chris and I called our friends and family and told them what was happening. We were overwhelmed with love and support and we chose to move forward with the pregnancy, despite so many fears and unknowns.
In the weeks leading up to Wolfie's birth, I had regular visits with the fetal cardiologist where we got echo-cardiogram's, met with surgeons, neonatalogists, and social workers. We were able to tour our two local hospitals: the one where I would give birth and the one where Wolfie would be transported to immediately after being born.
Because of the maternity care I received, we were able to plan ahead for Wolfie's needs at birth and let our family know what to expect - and what we all needed.
Wolfie was born by c-section and transported within 3-hours of his birth to CHO. He had open heart surgery when he was one week old and spent a total of 3-weeks in the hospital. But he was back there a lot - getting blood tests, getting a special (very expensive) vaccine, being monitored by cardiology and a number of other specialists. We were fortunate to have a social worker/nurse come to our home every week to help us keep him healthy and build his strength. We couldn't take him places for fear of germs that would land him back in the hospital. He wasn't able to be fully immunized and so he had to depend on the health and immunizations of everyone else to protect him.
As Wolfie approaches his 3rd birthday this September, he is a super awesome guy who is doing great! He loves reading, traveling on airplanes to visit his grandparents, and basically every sport, especially basketball, baseball, volleyball, soccer, golf and frisbee. And, Wolfie will never be fully "fixed" or be at some end place we may call "healthy." He has more heart surgeries in his future and there remains other associated issues that will need to be monitored and managed for his whole life. We also have every expectation that he can and will live a long, fulfilling life - given he has access to the care he needs.
Chris and I chose to have a baby we knew would come into this world with extra needs - or - what the insurers and politicians call a "pre-existing condition." I remember feeling full of relief for the Affordable Care Act because I knew Wolfie couldn't be discriminated against for how he was born into this world. I was aware how fortunate we were at the time that health insurance didn't need to be a main worry, given we had so many worries on top of just being new parents.
Republican Senators have drafted a new bill designed to undo what so many families before us have fought so long and hard for: government regulation of insurance companies to prevent them from limiting support for the care of kids like Wolfie. According to USA Today, the bill is a disaster for America. I fear for the financial future of my family.
Many of you may know that I've run a nonprofit organization for 15-years - it's a small business (up to $1 million annual operating budget, grown from $100K originally) with a handful of full time employees. As a small business employer, I've been dealing with health insurance companies, rising premiums and the difficulties of getting a good deal as a small business in the insurance marketplace for years. And yet, every single full-time employee of my organization has always had full health insurance covered through a gold-star level PPO.
I wish the burden of health care wasn't on employers for so many reasons but we have chosen to live out our organizational values and make quality healthcare a priority for our people.
Our government needs to do the same. The Affordable Care Act was heading in the right direction - for small biz employers, for kids like Wolfie and families like ours.
What's in front of us is terrifying.
We are lucky to live in California with Senators who will vote against this bill. I'm writing you because if you live a in state where your Senators may vote for the bill, they need to hear from their own constituents. How your Senator votes will affect kids like Wolfie and families like ours all around the country.
If you don't know where your Senators stand on the bill, check out this projection: https://www.washingtonpost.com/graphics/2017/politics/ahca-senate-whip-count/?utm_term=.8545a8fa1d0a
If you don't know how to call their office, you can find their office numbers here:
https://patch.com/us/white-house/how-call-your-senators-republican-health-care-bill
If you are willing to do this for Wolfie and for others like him, I encourage you to ask your friends and family to join you, too. You are welcome to share this email with people who may be willing to call their Senator and tell them to vote against this bill.
[My one request is to not share this information on social media, please.]
Thank you so much for considering our request. I am open to conversation on all this, too.
Aspen, Chris and Wolfie
Aspen cell:
P.S. Here's a few private photos of Wolfie that should not be shared, including a selfie we took yesterday.
P.P.S. If you want to know about what it's like to be parent to a kid with CHD right now, you can watch this interview I conducted with two other local moms: https://www.youtube.com/watch?v=FgtsyknlC2Y
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Aspen Baker
Oakland CA
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