Guest post by Anna. Her sons, Henry and Jackson are two of our Little Lobbyists. For months, they have been driving two and a half hours (each way) to lobby on Capitol Hill. This is their story.
In September of 2009, when my son, Henry, was seventeen months old, he had a Meckel’s Diverticulum rupture in his stomach. He has a bleeding disorder known as Von Willebrand Disease, and because his blood does not clot properly, he faced a total medical crisis. A rare, usually insignificant, problem led to complications that resulted in Henry almost bleeding to death. He was rushed to Johns Hopkins hospital, where he received a blood transfusion, and spent ten days in the ICU while the doctors at the hospital saved his life. On the last day of Henry’s stay, all the veins in his little arms, legs, feet, and hands had collapsed due to the constant blood draws to monitor his blood factor counts. For his final blood draw, they had to take the blood from his scalp. I stood outside of the room, because I couldn’t bear to watch. I was weak. I was exhausted. And I was hungry. I’d spent all ten days and nights in the hospital with Henry. At first, I had been living off of Doritos and potato chips from the vending machine until the last four days of his stay, when my husband’s co-workers had all chipped in to buy me a Subway gift card for the Johns Hopkins food court. We were a family living on one income with two children with medical complexities. We were in over our heads in medical debt and credit card bills. Our budget did not allow for us to eat at food courts. When Henry’s blood draw was over, we filled out the discharge papers, and headed home to Pennsylvania. Henry had been on a strict hospital food diet, was still hiccupping from screaming during his blood draw, and had one simple request when I strapped him into the car. “Nuggets?” he asked me. So I pulled into the nearest McDonald’s, counted out enough money from the change that was in the console of our car, and I bought my brave boy a Happy Meal.
My name is Anna. I am a stay at home mother of two, who lives in Hanover, Pennsylvania, and I never thought that I would ever need Medicaid. My husband and I began our married life in 2004 in a comfortable position in the middle class. We both had good jobs, and were thrilled when we found out we were expecting six months into our marriage. After our son, Jackson, was born, I found a happy balance between work and home. When Jackson was two years old, I found out that I was expecting my second son. At that same time, Jackson began having some inexplicable health issues. He kept getting sick, and we didn’t know why. I was missing so much work that my husband and I decided that I should quit my job to give Jackson my full attention, until we could figure out what was wrong. Losing half our income was difficult, but it was manageable, as long as we adhered to a strict budget. In February of 2008, I gave birth to Henry, six weeks early. His health issues began immediately. He spent over a week in the NICU, and was diagnosed with a heart defect and failure to thrive at two months old. Thanks to Google and a very attentive pediatrician, we discovered the answer to both of our sons’ medical issues in October of 2008, when Jackson was three years old and Henry was eight months old. They have a mutation of the PTPN11 gene, also known as Noonan Syndrome.
When children are diagnosed with a genetic condition like Noonan Syndrome, which affects various systems of the body, they are referred to a hospital that specializes in rare diseases for genetic counseling. We were sent out of state to Johns Hopkins hospital, where they began testing the boys for every possible complexity related to NS. Our financial situation had already become more strained with Henry’s NICU stay, cardiology visits, and the genetic testing. Jackson and Henry’s diagnosis had cemented my decision to stay home, so we were still only on one income. My husband’s employer insurance had high deductibles and copays. Once we began adding more specialists, procedures, and prescriptions to their medical care, the financial strain became a lot to bear. We relied on credit cards for everything. It was not only the medical bills. It was the added costs of gas money to get to Baltimore multiple times a month. It was the cost of having to purchase meals when the visits lasted through lunch and dinner. Henry’s Meckel’s Diverticulum rupture really pushed us over the edge. By 2010, our credit cards totaled $42,000, and we were receiving medical bills in the mail every day. Because the credit card balances were so high, and the cards were maxed out, the card companies closed them. Without the safety net of the credit cards, we were lost.
Our financial worries were nothing compared to the worries about our children.
As is common with genetic conditions, the boys were always getting additional diagnoses, which meant more specialists and prescriptions. Our lives were a jumbled mess of surgeries, specialists, prescriptions, hospital stays, emergency room visits, and lots and lots of debt. I can’t begin to tell you what it’s like to see BOTH of your babies suffer. Spending their toddler years in hospital beds. Throwing up at their own birthday parties. Missing trick-or-treat and Christmas parties due to illnesses. Not getting to roller skate or play sports or rough house like other children, because of their low muscle tone and bleeding issues. But to watch all of that – while not able to make up for all they were missing with other activities, like movies or vacations or trips to the zoo – was heartbreaking. During the times they were feeling better, we couldn’t do anything, because we couldn’t afford it.
Our days and nights were spent caring for the boys – distributing their medicines, cleaning up vomit, monitoring fevers, and keeping them from injury. I also spent that time trying to find ways to pay for their care. We held multiple yard sales a year. I would sell the boys’ clothing as soon as they outgrew it. If it was a few days before payday, and we needed to pick up a prescription, I would find a childhood keepsake and put it on eBay. Or I would choose a piece of furniture that we did not use often, and I would put it on Craigslist. We collected change, and we would cash it in for baby food, for gas, for milk. Sometimes there was nothing we could do. At one hematology visit, the boys had eighteen tubes of blood taken. It had been a rough day, and they wanted Happy Meals on the way home. But our bank account was overdrawn, and there was no change in the console. So I listened to my two little boys cry in the backseat the entire way home, over their sore arms and empty bellies. They would have to wait over an hour until we arrived home to eat.
I heard about Pennsylvania’s Medicaid program for children with disabilities though a fellow Noonan Syndrome mom on Facebook. I had always assumed that Medicaid was only income based, and I did not think we would qualify. After I researched the program, it seemed to be the answer to our financial problems. It was not an easy decision, though. Johns Hopkins had saved my children’s lives. Since Medicaid doesn’t cross state lines, we would have to make the switch to Hershey Medical Center, and say good-bye to the physicians we had come to trust. But at that point, we were on the verge of filing bankruptcy and losing our home. So we did it. We applied for Medicaid in June 2012. In no time at all, the boys were approved, and Medicaid began paying all of the boys’ deductibles and copays. Anything that my husband’s employer insurance doesn’t cover, Medicaid takes care of it.
It is important to me that people understand the true benefits of Medicaid. It is not only the medical care. It is also the feeling of finally being financially responsible. It is the feeling of self-worth. It is knowing that we can pay our bills. It’s the comfort of no longer having to decide between picking up a prescription and picking up a gallon of milk.
From 2008 until 2012, we had nothing. We did nothing. We went nowhere. Our only trips were trips to the hospitals, or were hosted by generous family members.
But now we pay our bills. We did not lose our home. We did not file bankruptcy. Slowly, but surely, without the hundreds of dollars a month in medical bills, we are pulling ourselves out of the rubble. We are paying our debts. We stopped getting collection notices. We stopped getting insufficient funds fees. We stopped being a burden on the utility companies and the credit card companies. My children now eat better, because healthy food is expensive, and when we were struggling, we could not afford fresh fruits and vegetables. In the five years since the boys were approved for Medicaid, we have been able to start getting on our feet and rejoin society. Our credit card debt is now below $10,000. Bill collectors haven’t called us in years. Our credit score doubled, and we are stimulating our economy. We still have to live on a budget. We are still on one income, because the boys’ immunity and stomach issues contributed to a decision to homeschool. Life as a parent of children with medical complexities will never be easy, and it will never be worry-free. But we are surviving. We no longer feel hopelessness. We are grateful for the security that Medicaid has provided. My husband and I went years without sleep, worried about our children, worried about money, and worried about how we would pay for the next major health crisis. We now know what security feels like, and we can focus all of our time and attention on keeping our children healthy.
If cuts are made to Medicaid, the states will need to decide who will be affected. Often, when these cuts are discussed, state legislatures consider the families like ours, who qualify for Medicaid under a disability waiver. They do not think of the families who have more than one child with medical issues, or the severity of those medical issues, or the costs of the deductibles, the treatments, the prescriptions, the emergency room visits. Or the gas money to get to nearest hospital qualified to care for medically complex children, which could be an hour, or two hours, or three hours away. My husband’s income could double this year, and if my boys lose their Medicaid, we would still go bankrupt within a few years.
I have already been where we are headed. I already know what it’s like to NOT have Medicaid. The sleepless nights, the going without, the fear of losing everything – all of that is still fresh in my mind. My heart aches for those who are about to find out what that is like.
I do not want to go back to that life. My children have been through too much and come too far for me to tell them that we are going back to where we were.
It is inconceivable to me that any member of Congress would do that to children, especially children who already struggle physically and emotionally. It is inconceivable to me that any member of Congress would do that to parents who already struggle physically and emotionally as they care for their children with medical complexities. It is inconceivable to me that any member of Congress would consider cutting a family’s lifeline. Medicaid is a lifeline. Families affected by poverty or medical complexities cannot survive without it. Every single American is one job loss, one diagnosis, or one accident from needing it. Making cuts to Medicaid is equivalent to cutting off a family’s heat in the winter, or taking a child’s shoes away, or clearing their cupboards of food. Because without Medicaid, many families cannot afford heat, or shoes, or groceries. Trust me.
Congress is not just taking our healthcare funding.
They are taking everything.
And I will fight with everything I have to hold on to it.
#saveMedicaid #savetheACA #protectourcare