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Family Tells ‘Roller Coaster’ Story

Springfield family testifies before White House against Medicaid cuts

Like most new parents, Carrin and Mitchell Brandt of Springfield were thrilled and exhausted after the birth of their first daughter in 2001.

Born on May 19, Bailey was a healthy and happy infant. “She cried a lot, but infants cry, and she was developing typically,” Carrin Brandt said.

In September, Brandt went back to work as a licensed marriage and family therapist. A week later, on Sept. 11, terrorists struck the World Trade Center. As a therapist, Brandt knew the tragedy of 9/11 would mean helping patients cope with the aftermath of the shattering, traumatic event.

What she didn’t know was that her family’s world would be forever knocked off its foundation a week later.

“About a week after 9/11, Bailey’s grandmother called and said she thought Bailey had a seizure. We went to Children’s Medical Center, and our world changed,” Carrin Brandt said.

After numerous tests, neurologists determined that Bailey had uncontrolled infantile spasms, but the specialists could not predict the outcome for Bailey.

“They couldn’t tell us if these seizures meant that Bailey was going to develop normally, or have life-long debilitating problems. We felt so hopeless,” Carrin Brandt said.

ON WEDNESDAY, JULY 6, Carrin, Mitchell and Bailey joined The Arc of Northern Virginia along with other families affected by possible Medicaid cuts as President Obama continues deficit reduction talks with Congress.

During a two-hour meeting with senior White House aides, the Brandts explained how Medicaid cuts would drastically impact their family. In addition to Bailey’s emergency surgeries, Medicaid has helped pay for 15 anti-seizure medications — one of which cost more than $1,000 a week — a gastrointestinal tube (G-tube) for food intake and nursing care, among other costs.

“If we lost Medicaid, it would jeopardize my small business as a tax and financial advisor, and my wife would have to quit her job,” Mitchell Brandt said. “ Bailey’s life and health could dramatically change. She wouldn’t be able to participate in our community and grow to be as independent as possible. These are not frivolous things we’re asking for.”

“We don’t want to ever see our daughter living in an institution, but without Medicaid funding, we don’t know what our future holds,” Carrin Brandt said.

“When I first met Carrin eight years ago, she was busy fighting Care First to get her daughter the services she needed. She was going to set up her own non-profit to address the increasing medical needs they were racking up as they worked to figure out how to help Bailey,” said Nancy Mercer, co-executive director of The Arc of Northern Virginia. “They got to The Arc because they were in crisis...that is how most people find us. The public sector runs out of answers and a ‘good’ case manager tells a family to call The Arc.”

Mercer said The Arc was founded nearly 50 years ago in Northern Virginia specifically to help families find answers and lives for their loved ones with disabilities, because nothing existed other than institutional care.

“For 50 years we have been working to educate the community that people with developmental disabilities have value,” Mercer said. “Medicaid gives value to our families. Although Medicaid funding moved to the community years ago, Virginia was one of the last states to sign onto Medicaid waiver funding,” she said.

During the Brandts’ White House meeting, they described their journey with Bailey as a “roller coaster ride” of hope and despair.

Once Bailey was diagnosed with infantile spasms, the 6-month-old, who was smiling and responsive, quickly lost those abilities and began having up to 12 seizures daily.

“Our neurologist was blunt with us: he told us ‘within a year, you are going to know more about seizures than your pediatrician.’ You try every new seizure medication there is. You start to gain hope, and then it plummets when it doesn’t work out,” Brandt said.

Although Bailey was rapidly regressing, the Brandts still clung to some hope that the seizures would lessen, or that a new therapy would work, or that doctors would come up with a new anti-seizure drug, or that a miracle would happen.

“It’s like a nightmare roller-coaster ride. You go through the worst despair, but then something little happens, and you think ‘okay, maybe this will help,’” Carrin Brandt said.

Brandt quit her job to care for Bailey full-time and Mitchell and Carrin’s life became a series of doctor’s appointments, trying to console Bailey, who was crying non-stop, and seeking any and all treatment that would help their daughter.

While Bailey was still bottle-feeding, the Brandts learned about a new diet that doctors at Johns Hopkins were trying on infants with seizure disorders.

“That was the one thing we had left, that she was a good eater. I could feed my baby. So we thought that maybe, just maybe, this very specific diet would help with the seizures,” Carrin Brandt said. The diet, which was 75 percent fat and very few carbs, was a lifeline. But then Bailey stopped eating.

“That was when I hit rock-bottom. She couldn’t eat, and she had to have a G-tube placed in her stomach,” Carrin Brandt said.

IN 2008, Medicaid paid for a hemispherectomy, a surgery that removed the left side of Bailey’s brain for better seizure control. Carrin Brandt said she noticed positive changes soon after the surgery. Bailey’s seizures tapered off to 3-5 a month, and she became more alert and responsive.

Although Bailey continues to have seizures, cerebral palsy and significant developmental delays, the Brandts said she has regained all of the abilities she lost when she had multiple daily seizures, and she has progressed further than they expected.

“She smiles, and she loves being around people. Bailey is my easiest child now,” Carrin Brandt said, laughing. Bailey has two younger siblings, Aylssa, 5, and Tyler, 3.

“I feel like we’re finally seeing the true Bailey. She’s very happy and confident. She enjoys the water, and she’s very fashionable. She also loves listening to Lady Gaga and Justin Bieber. Her brother and sister see her as just another member of the family,” Carrin Brandt said.

The Brandts said they can’t imagine what would have happened to Bailey without the surgery, which cost more than $200,000. Although she can eat solid food, she still has her G-tube for medicine, and she still needs adaptive, specialized equipment and care. She will always have long-term support needs.

“She has made us grow in ways we didn’t necessarily want to grow, but we’ve learned more from Bailey than anyone. She has made us stronger, and I think anyone around her gets a deeper sense of humanity,” Carrin Brandt said. “The bottom line is that Bailey is a human being, and she adds value to this world. She’s happy to be loved, just have someone kiss her and talk to her. She shows us what’s important in this life. When you see that, you wonder why we stress about all the other, crazy stuff in this world. ”

In September, Brandt went back to work as a licensed marriage and family therapist. A week later, on Sept. 11, terrorists struck the World Trade Center. As a therapist, Brandt knew the tragedy of 9/11 would mean helping patients cope with the aftermath of the shattering, traumatic event.

What she didn’t know was that her family’s world would be forever knocked off its foundation a week later.

“About a week after 9/11, Bailey’s grandmother called and said she thought Bailey had a seizure. We went to Children’s Medical Center, and our world changed,” Carrin Brandt said.

After numerous tests, neurologists determined that Bailey had uncontrolled infantile spasms, but the specialists could not predict the outcome for Bailey.

“They couldn’t tell us if these seizures meant that Bailey was going to develop normally, or have life-long debilitating problems. We felt so hopeless,” Carrin Brandt said.

ON WEDNESDAY, JULY 6, Carrin, Mitchell and Bailey joined The Arc of Northern Virginia along with other families affected by possible Medicaid cuts as President Obama continues deficit reduction talks with Congress.

During a two-hour meeting with senior White House aides, the Brandts explained how Medicaid cuts would drastically impact their family. In addition to Bailey’s emergency surgeries, Medicaid has helped pay for 15 anti-seizure medications — one of which cost more than $1,000 a week — a gastrointestinal tube (G-tube) for food intake and nursing care, among other costs.

“If we lost Medicaid, it would jeopardize my small business as a tax and financial advisor, and my wife would have to quit her job,” Mitchell Brandt said. “ Bailey’s life and health could dramatically change. She wouldn’t be able to participate in our community and grow to be as independent as possible. These are not frivolous things we’re asking for.”

“We don’t want to ever see our daughter living in an institution, but without Medicaid funding, we don’t know what our future holds,” Carrin Brandt said.

“When I first met Carrin eight years ago, she was busy fighting Care First to get her daughter the services she needed. She was going to set up her own non-profit to address the increasing medical needs they were racking up as they worked to figure out how to help Bailey,” said Nancy Mercer, co-executive director of The Arc of Northern Virginia. “They got to The Arc because they were in crisis...that is how most people find us. The public sector runs out of answers and a ‘good’ case manager tells a family to call The Arc.”

Mercer said The Arc was founded nearly 50 years ago in Northern Virginia specifically to help families find answers and lives for their loved ones with disabilities, because nothing existed other than institutional care.

“For 50 years we have been working to educate the community that people with developmental disabilities have value,” Mercer said. “Medicaid gives value to our families. Although Medicaid funding moved to the community years ago, Virginia was one of the last states to sign onto Medicaid waiver funding,” she said.

During the Brandts’ White House meeting, they described their journey with Bailey as a “roller coaster ride” of hope and despair.

Once Bailey was diagnosed with infantile spasms, the 6-month-old, who was smiling and responsive, quickly lost those abilities and began having up to 12 seizures daily.

“Our neurologist was blunt with us: he told us ‘within a year, you are going to know more about seizures than your pediatrician.’ You try every new seizure medication there is. You start to gain hope, and then it plummets when it doesn’t work out,” Brandt said.

Although Bailey was rapidly regressing, the Brandts still clung to some hope that the seizures would lessen, or that a new therapy would work, or that doctors would come up with a new anti-seizure drug, or that a miracle would happen.

“It’s like a nightmare roller-coaster ride. You go through the worst despair, but then something little happens, and you think ‘okay, maybe this will help,’” Carrin Brandt said.

Brandt quit her job to care for Bailey full-time and Mitchell and Carrin’s life became a series of doctor’s appointments, trying to console Bailey, who was crying non-stop, and seeking any and all treatment that would help their daughter.

While Bailey was still bottle-feeding, the Brandts learned about a new diet that doctors at Johns Hopkins were trying on infants with seizure disorders.

“That was the one thing we had left, that she was a good eater. I could feed my baby. So we thought that maybe, just maybe, this very specific diet would help with the seizures,” Carrin Brandt said. The diet, which was 75 percent fat and very few carbs, was a lifeline. But then Bailey stopped eating.

“That was when I hit rock-bottom. She couldn’t eat, and she had to have a G-tube placed in her stomach,” Carrin Brandt said.

IN 2008, Medicaid paid for a hemispherectomy, a surgery that removed the left side of Bailey’s brain for better seizure control. Carrin Brandt said she noticed positive changes soon after the surgery. Bailey’s seizures tapered off to 3-5 a month, and she became more alert and responsive.

Although Bailey continues to have seizures, cerebral palsy and significant developmental delays, the Brandts said she has regained all of the abilities she lost when she had multiple daily seizures, and she has progressed further than they expected.

“She smiles, and she loves being around people. Bailey is my easiest child now,” Carrin Brandt said, laughing. Bailey has two younger siblings, Aylssa, 5, and Tyler, 3.

“I feel like we’re finally seeing the true Bailey. She’s very happy and confident. She enjoys the water, and she’s very fashionable. She also loves listening to Lady Gaga and Justin Bieber. Her brother and sister see her as just another member of the family,” Carrin Brandt said.

The Brandts said they can’t imagine what would have happened to Bailey without the surgery, which cost more than $200,000. Although she can eat solid food, she still has her G-tube for medicine, and she still needs adaptive, specialized equipment and care. She will always have long-term support needs.

“She has made us grow in ways we didn’t necessarily want to grow, but we’ve learned more from Bailey than anyone. She has made us stronger, and I think anyone around her gets a deeper sense of humanity,” Carrin Brandt said. “The bottom line is that Bailey is a human being, and she adds value to this world. She’s happy to be loved, just have someone kiss her and talk to her. She shows us what’s important in this life. When you see that, you wonder why we stress about all the other, crazy stuff in this world. ”