Featuring Rebecca Wood, a Boston mother and community organizer: How do parents balance their own needs and their children’s in America’s high-stakes healthcare system? Learn how one devoted mother was forced to make a choice with traumatic consequences. Rebecca Wood has faced a years-long struggle to pay for the care needed by her daughter Charlie, who was born severely premature at only 26 weeks gestation. How were their lives changed by the ordeal? Hear how Rebecca is committing her life to passing Medicare for All to ensure lifelong care for her beloved daughter and herself.

 

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—– TRANSCRIPT —–

(Opening MUSIC – “Talk Back” 5 seconds, fade down)

Welcome to Code WACK!, your podcast on the state of America’s crumbling healthcare system and how Medicare for All could help. I’m your host Brenda Gazzar. 

Today, we’ll hear from Rebecca Wood, a devoted mother forced to sacrifice her own health so she could afford to pay for her daughter’s care. 

(MUSIC – “Talk Back” 5 seconds, fade down )

—– FEATURE —–

Some parents in America are faced with a daunting choice — provide health care for themselves or their children. This is their reality despite the fact that as a country, the U.S. spends more on health care than any other nation. As we’ll hear from this Boston mother, the consequences of such a choice can be devastating.

At first glance, Rebecca Wood and her daughter Charlie, whom she affectionately calls Charlie Bear, seem to lead ordinary lives. 

Rebecca: What did you do today at school?

Charlie: The usual stuff

Rebecca: Like?

Charlie: Usual. 

Rebecca: Like?

Charlie: Art

Rebecca: Oh, you had art today?

Charlie: How’d you know?

Rebecca: You just said that. 

Charlie: I said usual, not art,

Rebecca: Then you said, art, goofball, 

But since Charlie’s severely premature birth and ensuing complications, their lives have been anything but ordinary. Rebecca Wood tells us about their family’s riveting struggles to secure health care — and how they both became Medicare-for-All activists in the process. 

 

Rebecca: My daughter Charlie, she’s now 7. In 2012 she was born at 26 weeks gestation. I got severe, early-onset preeclampsia at 24 weeks and was hospitalized and I was in the hospital for 10 days, and then I developed HELLP syndrome and she had reverse end-diastolic flow in the umbilical cord and so she had to be delivered. There was no choice because we were both dying, and she was in the NICU (Neonatal Intensive Care) for three months.

She did amazing well as well as a micro-preemie could possibly do.

The first few days were kind of scary because we didn’t know whether she was going to survive. In fact, I didn’t find out till later until after they delivered her that they delivered her to save me. Nobody expected her to survive.

The first week or so in the Neonatal Intensive Care Unit at a Virginia hospital was a blur for Rebecca. The new mother was in intensive care for two days and didn’t get to hold Charlie until she was 10 days old. Meanwhile, she and her husband had no idea if their daughter would live to come home.  

Rebecca: I remember being terrified during those first two weeks. Honestly, the reason I sat beside her isolet day in and day out for 3 months is because in the beginning, I didn’t want her to die alone. It was the only thing I could do for her as a mom…but after those first few weeks, Charlie did really well. We had one scare where we thought maybe she was going to have necrotizing enterocolitis. And she responded to the antibiotics they gave her.

After that, Charlie grew bigger and stronger. She was finally discharged from the hospital after three months — and was able to go home without a feeding tube or oxygen.

Rebecca: She went home just a typical baby other than having for bottle feeding, it was a little different, but other than that, she’s this typical baby. And I remember they told us, they said:  ‘Wow, you guys got really lucky. You can go home and pretend that this never happened to you,’ and so like idiots, we did, for like two months. We just had these two months of normal.

Then Charlie had to be readmitted to the hospital because she was constantly vomiting up bile. It turned out that she had a milk protein allergy.

Rebecca: And that was the beginning of everything falling apart because while she was in there, another pediatrician just did like a general exam and she noticed some muscle tone abnormalities with Charlie, and she looked at it and she’s like, ‘ it’s probably nothing but it could be something so I’d keep an eye on it.’

Then for Charlie’s first Christmas photos, Rebecca and her husband struggled to get their daughter to sit up or hold her head up. They had to place a present in front of her to keep her upright.

Rebecca: And I remember how long it took us just to get a picture of her, and I was like, ‘my God, how are all these other parents doing this?’ and then it clicks in my head. Maybe all these other parents aren’t having to struggle like I was, and then I realized, ‘oh, my God, there’s something wrong with my baby.’

Rebecca started researching what could be wrong and came to suspect they were dealing with cerebral palsy. She polled parents of cerebral palsy children who said they wished they had gotten help right away.

Rebecca reached out to the University of Virginia’s pediatric department, which ran Charlie through diagnostic testing. Though too young to receive a diagnosis (for cerebral palsy), it was clear she had gross and fine motor delays. She also had an oral aversion in which she would instantly gag when a spoon was put in her mouth, something common in NICU babies.

Rebecca: So she had all these things. So she needed PT, OT,  speech and eventually, she has an opthamologist, a developmental pediatrician, a regular pediatrician, an orthopedist because it did end up that she has CP. She had a gastroenterologist, a nutritionist. I also got her into music therapy when she was about 8 months old…That was actually huge. That was how we pulled her out of herself. 

Audio of Charlie with her music therapist. 

Rebecca: As she grew, we found that she had all these other issues, like apraxia of speech…So she needed all of these specialists and all of this care. In the beginning, we could tolerate it because we were actually saving up to buy a home. After a while, we had eaten through our savings with copays and deductibles. And I also had to fight like hell for a Medicaid waiver for her. It was ridiculous. It was way harder than it should have been. 

In Virginia, Medicaid waivers are how children with disabilities get many of their needed services. Due to a 10-year waiting list, Charlie ended up getting on a waiver that had lesser services. The family moved to the mountains where rent was cheaper but still burned through money for Charlie’s medical expenses. 

They had to pay out of pocket for special eating utensils, feeding therapy, some orthotics and pediatric specialty formula. 

By the age of two, Charlie was walking but not speaking. Her pediatrician suggested speech therapy a few times a week, which insurance wouldn’t cover. But Rebecca found a speech program through a university for about $20 a lesson. After about a year and a half in the program, Charlie started talking.

Rebecca: It was like a switch was flipped. 

About this time, Rebecca realized that she herself had cracked a tooth. She was going to need a root canal and a crown — something she felt they couldn’t afford in light of what she had already spent that year in dental costs. It was also the time that Charlie’s speech therapy bill was due. 

Rebecca: So I paid her speech therapy and figured okay, I’ll just get my root canal and crown next pay period, no biggie. I mean how many times do people do that? 

I think it was over the weekend my tooth started hurting. I woke up and I decided, yeah, okay, I’m going to stay in bed today. My mouth is bothering me. I thought, all I have to do was make it a few more days. So I stayed in bed all day that day and around midnight, I had gone for a sip of water and I choked on it. I remember that happening and thinking, ‘oh my god, my throat is closing…. So I told my husband, ‘stay here with the baby, I’m going to the emergency room.”

I went to the ER and they just took me back immediately…. The doctor was standing with the student explaining that he sees this often in the emergency room and deciding whether they needed to cut me under my chin there and let the infection out while they trach me or if they had enough time to try IV antibiotics and so they decided to go the IV antibiotic route — thank goodness. (Laughter) After the course of IV antibiotics, I was discharged. And they said we don’t pull teeth here. You need to go to your dentist. You’re going to have some teeth pulled.

Rebecca vividly recalls sitting in the car that morning, trying to build up the courage and strength to go into the dentist’s office.

Rebecca: And I was telling myself, “This is the anything. A few years ago, when I sat in the NICU and I said I’d do anything for her to survive. This is it, this is fate calling in a debt owed.”  And so I sucked it up and I went in and it was so much worse than I could ever imagine because they kept pulling and kept pulling…I had all of my teeth pulled. They drained the infection. And they scraped away parts of my jaw. My gum line is messed up and I got significant bone loss all because of this infection. And it was 6.5 hours and I was awake the entire time because that is what I could afford… I was in bed for about a week. Yeah, it was brutal. It was incredibly painful and traumatizing, obviously.

Rebecca and her husband went on with their lives the best they could and in 2016, Donald Trump was elected U.S. president.

 

 

Rebecca: I remember everybody was so shocked that Trump won and my husband and I just looked at each other and shrugged, and said, “Of course, of course.” You know, at this point, we were so used to bad news.

But it also meant that now Charlie’s access to health care was in danger because they were going to try and repeal the ACA (Affordable Care Act)  and after everything we had been through where we had lost our savings, where we had given up on home ownership. I gave up on grad school. I lost parts of my jaw and my ability to eat and speak normally. I’ll be damned if bad policy was going to be what got in our way after all that.

So I had no idea what I was doing but I knew I wanted to fight so when they had rallies, whether it was in Richmond, Virginia or on Capitol Hill in DC or even one in Philadelphia I’d gone to or in Baltimore, I went. You’ve probably seen our sign. But it has her baby picture on it when she was a few days old. I think in the picture she’s 10 days old but she’s the length of my finger and she was too small for the micro-preemie diapers so they used a piece of gauze as her diaper. So I had that picture blown up and it said “Her birth is a pre-existing condition. Without coverage, she doesn’t have a chance.”

Then she heard Rep. Mo Brooks, an Alabama Republican, say people who lead good lives and do things the right way wouldn’t have to worry under proposed legislation that would repeal Obamacare since costs would be less for healthy people. 

I was at home when I saw that. Oh, my goodness. I actually wrote this raging blog post about it because it just angered me so, I said, okay, it’s on, I’m not stopping until we’ve won. 

About a week before the Senate vote, Rebecca feared they would lose the battle to save the ACA.

Rebecca: I wanted to be able to tell Charlie that when things were awful for us that I did everything in my power to fight for her. So when I was presented with an opportunity to do civil disobedience, I said yeah, okay, I’m in, I think it’s time. And before this, I had never had anything more than a traffic ticket or anything, so it was terrifying.

So that action, I think it was close to 200 people arrested in the Senate office buildings, I was in that action, in fact, CNN actually wrote about it, and they talk about a mom of a premature baby screaming outside the Nebraska senator’s office, and that was me. And that was the first of what ended up being 9 arrests in DC. 

And here’s Rebecca’s friend, Ben Wikler, MoveOn.org’s Washington director at the time, who was at the forefront of the protests, talking on the Bill Press Show.

Audio from Bill Press Show 

Rebecca and Charlie were standing outside the Capitol when the Senate moved to proceed with the vote to repeal the ACA. It was July of 2017.

Rebecca: I had my sign and we were watching on C-Span as it was happening. I was heartbroken. We were going to lose. Not only that, our lives were already bad. I mean how much worse was it going to get for us?

Rebecca had to drive to Floyd, Virginia several hours away to help register voters at a music festival. There, she ran into the Wi-Fi tent and watched the vote on C-span.

Rebecca: It ended up happening at 1 in the morning and I’m sitting there and I’m watching, it’s almost like watching an execution, watching this and then (Sen. John) McCain does his thumbs down, and if it weren’t for all the gasps in the room, I would have thought I was hallucinating because, you know, I never saw that coming. (laughter) And I was texting with Ben while all this was happening cause when McCain did his thumbs down, I was like oh my god, we won, he said, yes, I said, okay, you go celebrate, I’ll go celebrate. We’ll talk again tomorrow.

I wake up the next morning. I don’t feel elated as I wanted to feel. I’m talking to Ben, He said, don’t you feel amazing, good morning. No, Ben, I don’t feel amazing. I’m disappointed. He said disappointed? I said, yeah, I was hoping to feel some sort of closure. He said well what do you need to make that happen? I said I don’t know. I have to think about it. Then like three days later I texted him, I said I want it all. I said I want everyone covered, and he said, ok, hang tight, we’ll make that happen too. That’s how I got on to the single-payer fight and everything. I had looked at policies and stuff. It’s the only one that would make things better for families like me and make things work for everybody. 

Meanwhile, Charlie and her mom had been going to Boston frequently to hear Charlie’s favorite band, Dispatch and they became connected with the single-payer activist network there. 

Here’s one of Charlie’s favorite Dispatch songs: Letter to Lady J

Rebecca also became an activist on immigration issues, the Trump tax bill and the Brett Kavanaugh hearing. 

Rebecca: “And my husband hated all of it.”

After Rebecca and her husband separated, one of Charlie’s first questions was: Can we live in Boston? (laughter)

Today, the two of them do live in Boston, where Rebecca’s a community organizer for the Massachusetts Campaign for Single-Payer Health Care known as Mass Care. 

In recent months, Rebecca helped introduce Sen. Bernie Sanders’ Medicare for All bill — and testified before the House Ways and Means Committee during a Medicare-for-All hearing.

For Rebecca, having this kind of universal health care would be a dream come true.

Rebecca: Every day, I wake up afraid of health care. I worry about what’s going to happen, and it would give me money. I’m currently having work done on my mouth so that I can eat again. I can’t comfortably eat right now so I generally drink smoothies or eat like mashed potatoes or like small bites or soft foods and scrambled eggs… But even with dental insurance, it’s costing me for a year’s worth of work to where I hopefully will be able to eat comfortably, $6,500 out of pocket. I’m a single mom living paycheck to paycheck. I have no idea how I’m going to get that.

 

Rebecca: Honestly, I don’t even want to be in the policy arena. This feels like duty. It feels like giving my loss purpose and meaning, because right now,  what happened to me happened for no reason. But if everybody gets health care because this happened, then it was absolutely worth it. And it’s that closure that I initially set out to see.

Meanwhile, Charlie is doing well. She loves the color pink, eating chocolate with House Speaker Nancy Pelosi and visiting Washington DC to continue their battle for single-payer health care. 

Charlie: Why was your heart broken?

Rebecca: I was just really sad because I thought we were going to lose the healthcare fight.

Charlie: Ack. Mom, we would never do that!

Play Dispatch song Lady J. 

(MUSIC – “Talk Back” 10 seconds, fade down)

Outro

Well that’s it for today’s Code WACK!, a podcast by HEAL California. If you like what you’ve heard, please share, follow, and like us on Twitter and Facebook. Subscribe to our email updates at HEAL dash C-A dot org. This is a project of the California OneCare Education Fund. And I’m Brenda Gazzar. 

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