With All Our Might...Elevating Child Health Policy

2011 N.A.C.H. Family Advocacy Day Blog Roundup

On July 25-26, nearly 240 people representing over 35 children’s hospitals visited federal legislators to share their stories and explain why continued federal funding for the important work children’s hospitals do is so critical. Among our advocates we had 31 All-Stars -- patients from children’s hospitals across the country.

Many of our All-Star advocates and their support teams have blogged about their experiences in Washington, DC, including:

• All-Star Thomas Krilosky mom, Melissa, who was here with Rainbow Babies & Children’s Hospital
• The team from Children’s Hospital Boston, in DC supporting All-Stars Lily Watson and Kylie Herod, created a special blog just for this event
• Children’s Hospital Boston also wrote a wrap-up post for their main blog, Thrive
• Dayton Children’s All Star Bailey Allen, who chronicled her trip for the hospital’s blog
• The team from LeBonheur Children’s Hospital, who were here supporting All Star Shane Casey, blogged about what it takes to advocate for kids
• Tiffany Casey, Shane’s mom, blogged about their experiences as well
• MUSC Children’s Hospital featured a wrap-up of Chase Ringler’s Family Advocacy Day experience on MUSC's community blog
• Children's Hospitals and Clinics of Minnesota published a detailed posting of Ally Gillen's visit to Washington, DC.

Did we miss your blog post? Or have you just not gotten to writing it yet? Let us know and we’ll add your story right away!

Seeing the Sights in DC

By Jeanette Carter  
We arrived in Washington, DC, last night and are ready to begin our journey of meeting with Kentucky’s congressional representatives and senators advocating for Kosair Children’s Hospital.

Elizabeth is so excited! This morning we toured Washington, DC, learning fun facts about the city. But later this afternoon, our work begins. I’m glad we got a good night’s sleep and brought comfortable walking shoes! Elizabeth, her dad Mark and I will participate in a seminar on how to talk with our representatives, followed by appointments with our representatives on Capitol Hill. This is when we will get to demonstrate to our representatives, through Elizabeth and her story, that miracles do happen and that if it wasn’t for Kosair Children’s Hospital, Elizabeth’s outcome may ha 
ve been far different from being the healthy, vibrant young lady she is today. 

Access to Coverage Leads to Access to Care

By Luciana McGuire

With only a few days remaining before our journey to National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day in Washington D.C., our family is excited to be meeting with lawmakers and other families as we spread our message to protect pediatric care in the face of growing budget concerns.

We’re eager to be a part of N.A.C.H. Family Advocacy Day because it’s an excellent opportunity for us to show everyone how great the children’s hospitals are and what they can do for our kids.

Over the past year, our family has learned the importance of good doctors and good hospitals. Last July our 7 year-old daughter Ariana was injured in a bow and arrow accident at a friend’s house. She was rushed to the Level I Trauma Center at Robert Wood Johnson University Hospital where she was treated by a full range of pediatric subspecialists at The Bristol-Myers Squibb Children’s Hospital (BMSCH). The arrow had severed her middle cerebral artery, which deprived the left side of the brain of blood flow and caused a massive stroke.  After twelve surgeries at BMSCH, followed by eight weeks of comprehensive inpatient rehabilitation at PSE&G Children’s Specialized Hospital, Ariana learned to walk and talk again.

Many of the people we encountered during our time at the hospital weren’t sure if Ariana would make it. But she fought for her life, and if it hadn’t been for the skilled pediatricians and therapists that took care of Ariana, I know she wouldn’t have made it. Words can’t even express how grateful we are that her doctors had the knowledge and expertise to provide the extensive care she so desperately needed. We hope that sharing our story will help policy makers recognize the need to protect and preserve quality health care for kids.

Because of our journey, there are so many things I want to talk to legislators about that affect the quality of pediatric care in the United States. 

Although decades of advocacy have yielded strides that have improved children’s access to coverage, the infrastructure that ensures access to care has suffered serious blows in 2011. The Obama Administration’s fiscal year 2012 budget calls on Congress to eliminate funding for the Children’s Hospitals Graduate Medical Education Program (CHGME), a federal program that helps children’s hospitals train 40 percent of all pediatricians and nearly half of all pediatric specialists.

In addition, proposals to slash funding for Medicaid, the largest health care program for children in the country, have gained traction. Congres s is discussing proposals to cut the program’s funding by $1 trillion over the next decade and impose a cap on the amount the federal government can contribute.

Our family learned first-hand just how critical it is to have access to quality health care and quality pediatricians. God forbid your child faces a tragic situation like Ariana did, they need to have all the best equipment and doctors available to them. Because of the phenomenal treatment Ariana received at the Children’s Specialized Hospital, she is able to be a vivacious, energetic 8 year-old who is making progress more and more each day.

From Deep Valleys to Capitol Hill

By Tiffany Casey

These feet, which were once so unsteady, are now firmly striding their way to the steps of Capital Hill. It has been an amazing journey leading to this pivotal moment.  On July 26, 2011 we will climb the steps of Capitol Hill to have the voices of our children heard…literally.  My 5-year-old son and his 4-year-old sister are heading with me to Washington D.C. to speak to Congress!
 
To look back over the past five years, I am amazed that we can even stand on our feet.   There have been earth-shattering moments in our lives that left me crumpled in a ball in the corner. Many times I have been unable to muster the strength to place one foot in front of the other. But the despair turned to hope when we entered the doors of Le Bonheur Children’s Hospital.  Our hope soon gave way to triumph because of the care we received at Le Bonheur.

Shane was a perfectly healthy baby boy until the day, when he was just 4 months old, that he began having violent convulsions. The convulsions quickly got worse, and they came more frequently. Shane was having difficulty breathing and losing consciousness and his pediatrician was unable to give us a diagnosis for our very sick baby.

After several misdiagnoses and a lot of very invasive tests, including a spinal tap, I was able to get Shane admitted to Le Bonheur Children’s Hospital’s Neuroscience Institute. The doctors there were immediately able to diagnosis Shane with a very rare form of epilepsy. There are just 2,000 known cases of infantile spasms around the world.

Within hours of his diagnosis, Shane was placed on aggressive drug therapy, and his spasms were calmed. While the medication initially had some difficult side effects, the doctors were able to adjust the dosages, and by the time he turned two, Shane was walking and talking normally.

Just a year after the doctors at Le Bonheur saved Shane’s life, he was airlifted back to the hospital’s Intensive Care Unit after suffering complications from a routine surgical procedure at another medical facility.

Le Bonheur has saved and maintained the quality of Shane’s life not once, but twice!  Thanks to the medical teams at Le Bonheur, Shane is a happy, healthy 5-year-old. He enjoys reading, math and golf.

This is why our family gladly advocates for children’s health issues for the entire Mid-South.  We have come from the shadows of darkness and the depths of despair.  Too many miracles have taken place within Le Bonheur for us to sit quietly.

Join us on our journey.

Louisville Natives Head to Washington, D.C.

By Mark and Jeanette Carter

Without a doubt, health care is a “hot” topic in our country today, especially when it concerns kids. As parents of a child with special needs, we know firsthand how important it is to have access to quality medical care, no matter where you live.

As first-time attendees of the annual N.A.C.H. Family Advocacy Day, it’s a great honor and privilege to represent Kosair Children’s Hospital. And while we’re looking forward to exploring Washington, D.C., and its many tourist spots (including the Lincoln Memorial, Library of Congress and the Washington Monument), we are most excited about being able to meet with other people who are passionate about children’s health care.

Events such as the N.A.C.H. Family Advocacy Day are important for many reasons. The decision makers in Washington need to see a “face” with the programs that are at risk of being cut. We hope that by meeting children who have been affected and hearing their stories, our lawmakers will realize that cutting funding is not an option.

Kosair Children’s Hospital gave us the ultimate gift 18 years ago – our daughter Elizabeth. We want to help ensure that other children like Elizabeth, will be given the best care possible, and will lead happy, healthy lives. We hope the N.A.C.H. Family Advocacy Day will make a “monumental” difference in children’s health care.

The Rhynes’ Reason for the Season

Myleah Rhynes had spent nearly 24 hours in ER exam rooms at Children’s Medical Center Dallas on Christmas day. She hadn't slept. She hadn't eaten. She wasn't sure if her children and husband would live.

Then something happened that made Myleah so happy that she cried.

When her children were taken to their rooms in the intensive care unit, each one had six presents waiting for them. "As soon as I saw it, I just started bawling," Myleah said.  "Those gifts meant the world to us last year, so we want to do the same thing for other families."

The presents were the first bright spot for Myleah since she received a phone call that no parent would want to receive. On Christmas Eve of 2009, a nurse from a small Oklahoma hospital called to tell her that her husband, Daniel, and their three children were hit by another car on their drive back from visiting grandparents.

Myleah wasn't in the car with her family because she stayed home to make Christmas Eve dinner at their home in Providence Village, TX, about 30 miles north of Dallas.

"My neighbor had just stepped over to say ‘Merry Christmas,' when I received the call" Myleah said. "I don't remember this, but she says I was screaming and throwing the phone and pushing her away from me. I lost it."

As soon as Myleah made it to the Oklahoma hospital, staff there told her that the children needed to be transferred to a Level I trauma center. The children were sent to Children's Medical Center, and Daniel was sent to an adult hospital in Dallas.

Morgen, 9, and Meadow, 6, had severe internal injuries from where their seatbelts sliced into their abdomens. Meadow also had spinal and neurological damage. Both were rushed into surgery. Joffrey, 1, was only bruised, but he was in shock and screamed every time anyone got near him.

"Those were the scariest 24 hours of my life," Myleah said. No family or friends could be with her because a snowstorm had shut down the roads. The staff at Children's did their best to make sure she wasn't alone.

"Rosie Nolan was our nurse in the emergency department at Children's, and she was just phenomenal," she said. "After I had been there around 18 hours, I started passing out from exhaustion and shock, and she made sure I took a nap. And the social workers and staff never left my side, which meant a lot, because I couldn't believe they'd be willing to do that on Christmas Day."

Myleah said the next few days following Christmas were a blur of signing papers in waiting rooms while Morgen and Meadow underwent multiple surgeries. In addition to their abdominal surgeries, they needed operations to repair collapsed lungs. Meadow also had to have her skull and spine realigned.

Day by day, the girls continued to get better, and both were back home by February along with the rest of their family. Daniel spent a week in the hospital recovering from head trauma and a broken leg. By the middle of May, the girls were back in school, and Joffrey was rampaging through the house again.

The long-term effects on their health appear to be minimal at this point. Meadow has some vision issues, but glasses have corrected most of those. Morgen and Joffrey show almost no lasting signs the wreck ever happened.

"Kids are amazing," Myleah said. "If any of that happened to me, I would probably still be debilitated. But they're resilient and running around and having a great time."

Morgen and Meadow made a big return to Children's by serving as grand marshals in the Children's Medical Center Holiday Parade.
"The girls were so excited," Myleah said. "It was phenomenal. They had only seen small-town street parades before that, so they enjoyed every minute they were there."

She said the family will make another trip to the hospital when they drop off gifts to the child life department. "It will be our family Christmas tradition from now on."