With All Our Might...Elevating Child Health Policy

Alyssa's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Alyssa de Jong, by her mom, Angela.

Alyssa’s medical history is long and complicated.  Born a few weeks early and weighing in at six pounds, six ounces, she started life with a bit of a struggle. It’s not just that she was small, but that she didn’t grow, eat, sleep or develop as I thought she should. Doctors said she was okay and she would catch up—don’t worry. From the start, it seemed to me that something was not quite right. Why didn’t she hit milestones like the other kids? I was told she was developmentally delayed.  But why? Why was she so much smaller than the other kids, and didn’t seem to grow? I was told she had short stature. But why? As she got older, Alyssa was riddled with medical symptoms: epilepsy, hypotonia, short stature, two heart defects, scoliosis and cervical stenosis among the many. But why? Nine years would go by with no answers, only more medical issues.

It wasn’t until Alyssa’s dermatologist called to tell us the spot removed from her forearm was melanoma that we were able to find answers. The cancer started on her arm and traveled to her lymph node. She had three surgeries along with numerous tests, procedures and scans. St. Jude Children’s Research Hospital provided my daughter with the most top notch and compassionate care possible. They found the cancer and took it away. But then they went even further.  They looked at her medical history as a challenge and told my family they would not stop until they figured it out. Yes, there were many tests, scans and blood workups along the way. But there was also an answer. They were finally able to diagnose my daughter with a rare chromosome syndrome.

Now at 10 years old, we have a name for my daughter’s medical problems. We know what it is, what it means and what we need to do to take care of her. Having an answer was like having the heaviest of burdens lifted from my family’s shoulders. St. Jude did not give up on finding an answer, even when it seemed no answer was in sight. St. Jude not only saved my daughter’s life, but also gave her hope for the future. Knowledge is power, and they gave our family the power we needed at the darkest of times. Now we look towards a bright future with our daughter.

Just as our family was starting to put some distance between us and cancer, we were hit again. My six-year-old nephew was diagnosed with leukemia. We were absolutely knocked off our feet. Once again we put our trust in St. Jude. He is doing great and is in the second phase of treatment; however, he still has a long road ahead. Again, the compassion and care we found at St. Jude has been world class.

Our family is thrilled to take part in Family Advocacy Day in hopes that we can make a difference. We hope that through our journey and our struggles we can help pave the way for future families lost, feeling alone, looking for answers. St. Jude Children’s Research Hospital is the most amazing place filled with caring, compassionate staff, doctors, nurses and researchers who are some of the best in the world. We have looked for the words to say “thank you” for everything they have done for our family. But words just are not enough. When the opportunity came up to represent St. Jude for Family Advocacy Day, it was an easy choice to say yes. But it turned out to be not so simple—it falls on the same day as our One Direction concert tickets.  I sat down with Alyssa and let her make the choice. Apparently, it wasn’t as difficult as I thought. Even my 10 year old daughter knew that this was a bigger deal than a concert. You see, despite all the surgeries, tests, scans, needles and scary stuff, St. Jude is still a place of happiness and fun to my daughter. And, she is happy and excited to represent it!

Surviving the Unexpected: The Stoltz Family Story

On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is from the Stoltz family, who will be attending on behalf of Children’s Hospitals and Clinics of Minnesota.

Imagine yourself boarding an airplane, excited for the destination that lies ahead. Despite what promises to be a simple trip, during the course of the flight things start to go wrong.

An engine fails, a fire breaks out, a wing falls off and you have intermittent guidance from the control tower. You cling to your seat and hope against hope that somehow you’ll make it to the ground safely. You are filled with anxiety and paralyzing fear. Your well-being is in jeopardy and you are virtually powerless to do anything about it.

An early arrival

That’s how my husband and I felt when we were expecting our daughter, Katie. We set out on a journey to a highly-desirable destination. We got the news that our family was going to be blessed with a little girl. Her expected date of arrival: April 14, 2009. However, during the course of our pregnancy, things took dramatic and frightening twists and turns.

Our daughter was born by emergency C-section 15 weeks ahead of schedule; not on April 14, but January 3, at 3:00 a.m.! 

Everything about her underdeveloped and unprepared body screamed that she was not ready to meet the world. She weighed one teeny-tiny pound and measured a mere 11 inches in length. She was ventilator-dependent and needed paralytics with sedation to keep her from using her energy for anything other than sustaining life. It was almost inconceivable that the intelligence and capabilities needed to live a full and productive life could possibly exist inside that frail little frame.

A talented care team

Most gratefully, we had an experienced and unflappable pilot in charge of our daughter’s care, Children’s Hospitals and Clinics of Minnesota. Katie was cared for by an incredibly talented, dedicated and compassionate team of professionals: nurses, doctors, respiratory therapists, radiologists, surgeons and environmental specialists. People who know and love children. They expertly stepped into the situation and took control. They calmly and adeptly guided our daughter through her 99 days of intense hospitalization in the Children’s NICU.

They saw her through bronchopulmonary dysplasia, pulmonary hypertension and chronic lung disease. They performed 21 blood transfusions and helped her triumph over a blood-stream infection. They saved her vision through laser eye surgery and pulled her back from the cusp of death on more than one occasion.   

Children’s of Minnesota helped to keep our family airborne when we felt like the world was crashing in. They sustained us and counseled us through the trauma of our daughter’s frightening start to life. They delivered us to a safe place, from which we could journey forward. This is what they do every day. They step in to the chaos. They create order and game plans for families who are not equipped with what they need, when undesirable and unexpected changes are made to their itineraries.

An extraordinary daughter

Amazingly enough, despite all the complications associated with her birth, our beautiful daughter was delivered to our arms on April 12, 2009 — two days before her original due date!  She came home on oxygen and with an apnea monitor, weighing just five pounds. She was discharged on Easter Sunday, which felt incredibly symbolic for our family.

Katie is now a vibrant and healthy 4½ year-old, who is doing wonderfully!  It takes a trained-eye to detect the minor challenges she is working to overcome.  She is a smiley preschooler who loves to sing, jump on the trampoline, and wrestle with her 3 big brothers.

It may seem like an exaggeration to say that the work performed by Children’s of Minnesota is miraculous. But to us, it’s nothing short of that. They saved our daughter, and in so doing they saved our family.

Rachel's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Rachel Edwards by her dad, Gary.

There has always been a certain comfort for parents that live in a community that is fortunate enough to have a hospital dedicated to children. But despite that comfort, most of us never really consider that our children or grandchildren will ever be patients.  In our case, MUSC Children’s Hospital, located near the center of Historic Charleston, was such a place - one for other children and for other families. We never even once pondered that we could be facing a life threatening disease with our child. That only happened to other people.

But in January 2007, that all changed when our 10 year-old blonde haired, blue eyed angel, Rachel Jean, was diagnosed with osteosarcoma, better known as a solid tumor bone cancer to most of us. From the moment of the initial diagnosis, our lives changed in a profound way as we immersed ourselves into membership of a select club. We were a cancer family. And we were headed to that place for other people – MUSC Children’s Hospital.

Each member of that club can still remember the words, “your child has cancer.” The words that immediately follow, most of us cannot remember. A blissful life has been interrupted.

Rachel has been a special joy. And we wanted to become indignant that she could have cancer. If we are honest, we probably wanted to be angry. And we understood fear in whole new way. But there was really no time because our MUSC Children’s Hospital team moved quickly, even as the air became too thin for us to catch full, deep breath.

We learned the value of a hospital dedicated to children’s health through the past six years of three recurrences after the initial diagnosis, ten surgeries including limb salvage surgery, a thoracotomy, a lobectomy, more than eight chemotherapies, three radiation protocols, and immunotherapy. It became apparent that we were in a special place with a passion for excellence, a passion for children and, in fact, a passion for the entire family. To house a child inpatient for more than 150 nights through the first three years of our journey requires a unique skillset and unparalleled facilities for children. Unlike the adult hospitals that treat children like mini-adults, our MUSC Children’s Hospital gave us the best chance for success medically and emotionally.

It also became apparent to us as we learned more about the disease that progress has been slow in many pediatric cancers. In fact, overall spending for pediatric cancer research is small.  And seeking the cure of pediatric cancer and other pediatric diseases presents an opportunity for those in positions of authority to make a meaningful impact in the lives of families in our country.

Rachel, now 17, sits at the sweet intersection of answered prayer and great science with the perseverance of four doctors, in particular, who simply did not have an ounce of quit in them. And neither did Rachel. Despite being told frankly that solutions to her illness seemed elusive, Rachel always had a view of a long future with herself in it. And today we are thankful for the community that rallied around us at MUSC Children’s Hospital and walked with us every step of the way.  We are ever grateful for Drs. Kraveka, Hudspeth, Jenrette, and Anderson, and the legions of staff that walk with children everyday.

Today, Rachel is 15 months in full remission and we live with thanks that many years ago, our community leaders decided strategically to make children’s health a priority. And they have done it exceedingly well.

And Rachel gave us many lessons along the way. She lived Romans 5:3-4 nearly every single day: “Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

Emily's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Emily Whitehead by her mom, Kari.

Emily was diagnosed with standard risk pre-b acute lymphoblastic leukemia on May 28th, 2010, shortly after her fifth birthday. Her oncologist explained that it is the most common form of childhood cancer, and is curable in more than 85 percent of children. Although Emily had a long road ahead of her - 26 months of chemotherapy - we were very optimistic that she would complete treatment and be fine.

From the beginning, however, her treatment never went as expected. Within the first few weeks she developed life-threatening infections in both legs that required surgery. The surgeon said the infection was spreading so fast she may not make it through the surgery and if she did there was a good chance he would have to amputate one or both legs. Thankfully, amputation was not necessary, and they were able to get the infection under control. But the doctors said they had not seen infections like that in over 10 years. In Emily's first month of treatment we went from being devastated with being admitted to the oncology wing of the hospital to celebrating leaving the pediatric Intensive Care Unit and getting back to the oncology wing. Emily went into remission in her first month of treatment. The doctors told us that she had one of the worst intensification phases they could remember, and that hopefully her remaining treatment would go better.

Seventeen months into treatment we learned that Emily had relapsed. Since she relapsed while still getting chemotherapy she was now considered to be high risk and went from having an 85 percent chance of being cured down to 30 percent. Emily went through four months of intensive chemotherapy in preparation for a bone marrow transplant, which was scheduled for February 2012; however, two weeks before her transplant date she relapsed again. After another month of chemotherapy did not get her back into remission we learned she was no longer eligible for a bone marrow transplant. Doctors felt it was unlikely that further treatment would get Emily back into remission. Our options were to take her home to spend the few weeks we had left with her or take her to Children's Hospital of Philadelphia (CHOP) and enroll her into a phase I clinical trial that had never before been tried on a child. It was a glimmer of hope and we knew that it was Emily's only possible chance of getting back into remission.

The research team explained to us that as part of the clinical trial her T-cells would be taken out of her blood and sent to a lab where scientists would train the cells to recognize and kill cancer cells. On April 17, 2012, the modified T-cells were injected back into Emily. She became very ill from the treatment and spent several weeks in the ICU on a ventilator. Emily never gave up and continued to fight while doctors worked around the clock to figure out why she became so sick. She held on long enough for doctors to administer a medication that dramatically improved her condition. However, because she had become so sick, she had been given steroids in the ICU; it was thought that the steroids had likely killed the modified T-cells before they had a chance to kill the cancer cells. We were back to thinking again that there wasn't any hope left. Then on May 10, almost four weeks after receiving the modified T-cells, her bone marrow was checked for cancer cells and we heard the words "Emily is in remission." The treatment had worked!

Emily recently celebrated one year cancer free! Today, if you hadn't heard her story, you would never know that early last year she was only given a few weeks left to live. She is finishing 2nd grade at the top of her class. She loves writing, dancing, playing with her dog Lucy, and plans to one day become a veterinarian, a teacher and an artist. 

http://www.caringbridge.org/visit/emilywhitehead/journal
http://www.facebook.com/emilybrookewhitehead
http://emilywhitehead.com/

Patrick's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Patrick Bibbee by his mom, Amanda.

My son, Patrick, loves life. He literally soaks it in with every sense of his being. And he embraces it with a love that is exuberant, uninhibited, and even fearless. Others look at him and think he's just a wild, outgoing, two-year-old little firecracker with matching dime-sized dimples - that he was born that way. Maybe that's the case. But when I look at him I see a soul with a history so deep and raw, that it's obvious to me his early struggles have contributed to his zeal for life.

You see, Patrick is a twin who was born far too soon. 23 weeks to be exact. That's 17 weeks too early. He weighed just 1 pound, 7 ounces at birth and was less than 12 inches long. His eyes were still fused shut, his skin was translucent and paper thin, and his tiny hands and feet were only as big as my thumb. He and his sister, Paige, were the smallest, and ultimately, sickest babies I had ever seen. At 23 weeks gestation, no organ is prepared to or able to function on its own. They both relied on a ventilator to breathe and numerous medicines and interventions to keep their organs from failing. Those first few days, Paige fared far worse than Patrick. At just six days old, she developed necrotizing enterocolitis (NEC), a gastrointestinal disease that involves infection and death of the intestine. Unfortunately, it's the most common and serious gastrointestinal disorder in preterm infants. It came on fast and furious. So much so, that it took her life that day.

Looking back, she ultimately saved her brother's life at the same time. Because her condition deteriorated so fast, the doctors decided to recheck Patrick's abdomen with new X-rays that were taken from a different angle. And there it was. Free air in his belly, which signified a perforation, or hole, in his intestine. He underwent emergency surgery where a portion of his intestine was removed and an ileostomy was performed. His life was saved that day, and it wouldn't be the last. This was the first of eight surgeries Patrick would undergo during his six month NICU stay at Nationwide Children's Hospital (NCH) in Columbus, Ohio. He endured two more abdominal surgeries, the ligation of a heart vessel, and several eye procedures due to Retinopathy of Prematurity and a detached retina. In between all the surgeries, he battled bronchopulmonary dysplasia, kidney reflux, brain bleeds, infections and anemia. Every day it seemed there was a new obstacle to overcome. But Patrick and his doctors never gave up.

During Patrick's hospitalization, we watched three seasons pass us by from the windows of NCH. During this time, the hospital became our second home and the doctors and nurses our second family. I can't put into words just what the doctors and nurses who took care of my son mean to me. They saw me on my best days, and they saw me on my worst days. They comforted me on the days that Patrick struggled, and celebrated with me on the days that he reached what had formerly seemed like insurmountable milestones. They never gave up on my son. They not only healed Patrick but helped heal our family as well. They really are extraordinary people with extraordinary jobs.

On top of everything, my husband Shannon, a Captain in the Army Reserves, was deployed to Iraq during Patrick's entire NICU stay. Because of his being called to active duty, we were covered by the military's TRICARE insurance plan, which paid for 100 percent of Patrick's hospital bills. With a child struggling to survive and a husband overseas, I can't imagine the additional stress of having to worry about how we would pay for another surgery or another night in the hospital. We realize we're one of the fortunate few who didn't have to worry.

Shannon, Patrick and I look forward to traveling to DC next month to represent NCH for Family Advocacy Day. We'll be advocating not only for those preemies, like Patrick, who survived and thrived, but also for those tiny angels, like Paige, who fought a courageous, admirable battle that not even the largest of giants could have won.  

Lily's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be adding posts by the amazing moms and dads of some of our attending children. Today's post comes from Chrissie Blackburn.

We are so excited that University Hospital’s Rainbow Babies and Children’s Hospital is providing my family with the opportunity to go to the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day in Washington D.C.! It is imperative that we, as experienced parents of children who receive Medicaid, share our perceptive of how this coverage has improved the quality of life for our medically fragile children. In addition, I think it is a great opportunity for all the families involved to share their experience and strength of the journey they are on with their very special child.

As an active Patient and Family Engagement Advocate, and member of the National CMS Partnership for Patients campaign’s Patient and Family Engagement Network, I have come to learn about the many efforts and best practices emerging to save health care dollars, to reduce hospital acquired conditions, and readmission rates. Even in the realm of insurance I believe it to be important to look at the entire family and how having a loved one who is sick can change things dramatically. Medicaid is not a “poor person’s” insurance. It is a government-funded program to ensure health care accessibility for those that need it most; this includes my own daughter, and all the children and families who will be representing the importance of Medicaid coverage.

I am excited to meet so many people in Washington D.C. and above all I am thrilled to introduce the most wonderful person in my life to all of those we are about to meet. Lily is my experience, she is my strength, she is my hope; she is the reason why I am doing everything today to improve health care for patients and families.

Sydney's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Sydney Mayrell by her mom, Erin.

The words of a parent's worst nightmare, "your child has cancer." These are the words that I heard on April 12, 2010 when Sydney was just three years old…

Before a family trip to the beach, I felt a lump in Sydney's left leg. After a week it hadn’t gone away (though it caused her no pain at all). I scheduled an appointment at her pediatrician's office and with the use of a sonogram they were able to tell us those devastating words above. We were immediately referred to Children's Medical Center of Dallas, specifically the Center for Cancer and Blood Disorders department; a place any adult would be intimidated to go and now I was taking my toddler who was completely oblivious that anything was going on inside her tiny body. I remember sitting in the waiting room thinking, "this cannot be real, everyone seems so happy and excited like nothing is going on; don't they know that these children have cancer?" Now I think how naive I was, this is a happy place because it is able to give us answers and a plan. Sydney was called back to see a pediatric oncologist who specializes in soft tissue tumors. After a physical examination they sent us to radiology and then back to the clinic to discuss the findings from radiology. After taking a few deep breaths and realizing we are not alone on this trek through the unknown, they were able to tell us that it was more than likely a soft tissue cancer called Rhabdomyosarcoma, but that a biopsy would need to be done of the tumor to verify the histology.

We were referred to an orthopedic oncologist to complete this biopsy and possibly to refer back to later on when chemotherapy had shrunk the tumor down enough to remove it. Final histology report came back; confirmed Rhabdomyosarcoma in the left leg, with positive lymph nodes in the pelvis, making it Stage IV due to metastases. Another devastating blow to our emotions, but yet again, the doctors never disappointed and ALWAYS had a plan of action.

After several rounds of chemotherapy, it had been determined that the tumor could be resected along with a large part of Sydney's quadriceps muscles so there were no questions of the cancer being removed from her leg. After what seemed like an eternity, we heard the most joyous words we had heard in three months, "the cancer is out and all margins of the muscle are negative for cancer." Sydney had a speedy recovery following her surgery and of course what every child should have; an "Adios Rhabdo" party!

Sydney continued to receive intense chemotherapy until June 28, 2011. She endured countless blood transfusions, platelet transfusions, hospital stays, and radiation. She is now two years out from her last chemotherapy treatment and cancer free! She will be moved to the survivor program in June of this year as long as her upcoming scans are clean. She truly is a survivor, a warrior, and the most precious hero a parent could ask for. She has settled into life with a scar that runs the length of her upper leg and a great story to tell all of her friends about how the scar came about. Continuing to work through the effects of the chemotherapy and radiation is our latest adventure, including most recently a fracture of her femur caused by the weakening of her leg due to radiation.

We are now the ones walking into the clinic happy and excited and full of hope and this would not have been possible without the outstanding work of all of the doctors, nurses, social workers, and entire staff at Children's Medical Center. I will forever be indebted to these staff members who celebrated Sydney's triumph over cancer, and who ultimately saved her life and was able to give me my enthusiastic, empathetic, loving, and still independent now six and a half year old first grader! 

Click here to read more about Sydney's condition and treatment.

Riley's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Riley Cerabona, by her mom, Kristen Davis.

Our daughter Riley is a brave and resilient ten and a half year old who loves animals, her friends and family, drama and singing and playing outside. She lives with her three cats, one dog, older brother Cole and parents in Kennebunk, Maine.

When I was 18 weeks into my pregnancy, a routine ultrasound showed that Riley had a lymphatic malformation in her chest and armpit. The pediatric surgeon in Maine had no experience with this type of vascular anomaly, so we did some research to find the person who could best help our baby. The search led us to Dr. Steven Fishman at Boston Children’s Hospital’s Vascular Anomalies Center.

Under the care of Dr. Fishman and his amazing team, Riley had the malformation and overgrowth removed at just three months old. Unfortunately the lesions continued to grow in and on the outside of her body, and she developed many complications related to the disease that she would eventually be diagnosed with. The Vascular Anomalies Center team did a great job caring for Riley, but weren’t fully sure what was causing the new malformations. (At the time, CLOVES was so rare it hadn’t been identified by doctors yet.) As she grew she needed more surgeries and medical interventions. At just ten years old, Riley has had 16 surgeries, 40 MRIs and countless hospital visits.

By the time Riley was five years old, Boston Children’s researchers had identified CLOVES as a specific syndrome, and she was diagnosed with it. It’s a progressive and very rare condition, affecting only about 100 people worldwide. She was also diagnosed with Type One Diabetes, and is on an insulin pump. We travel to Boston Children’s Hospital a minimum of once every three months, and sometimes we go to Boston several times a month.  There she receives all of her specialist care, as the coordinated care that she needs is not available in our home state. Our family is so very grateful for the level of care that Riley receives at Boston Children’s.

Research into rare diseases and non-surgical treatments is also important to our family. Riley recently took part in a 48-week clinical trial of a drug called Sirolimus at Boston Children’s Hospital. The intent of this drug is to slow or stop the growth of the lesions/complex vascular anomalies that Ri’s body keeps growing. After a very stable year, Riley is continuing this medication under compassionate use.

We are excited to participate in Family Advocacy Day so we can meet other families and children who are positively impacted by the coordinated care they receive at children’s hospitals, to share our story and to hear the stories of others and to advocate for the needs of children like Riley.

For much more on Riley and her family, check out this series of NPR stories. 

Tori's Story

NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Over the next month, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story is about Victoria Everett by her mom, Carye.

Victoria Everett was Twin B and was born at 31 weeks. She weighed just 3 lbs. 2 oz. and was 16 inches long. We found out through routine ultrasounds that Victoria had too much fluid on her brain and may have some problems. Once we knew that, we easily decided on a name, Victoria Faith. After 33 days, both Tori and her sister Brittany came home together.

Victoria showed some problems when she was four months old, and began undergoing testing on her brain. At 14 months old, Tori received a VP shunt. Right away, we noticed such a huge difference in her. Tori continued to vomit and could not keep food down. She also developed several pneumonias as a result of aspirating her food. We made the decision to have more surgery, which took place in January of 2004. Tori had a Nissen fundoplication and a G-Tube placed. All of Tori's fluids would go through her feeding tube, but she could still eat. Another test was done later in the year and Tori was diagnosed as a silent aspirator.  She was not longer able to eat anything by mouth and could only be tube fed.

In October of 2007, tests confirmed that Tori needed her Nissen surgery redone. She entered Johns Hopkins for surgery on October 15th. The surgery went well, but Tori's lungs began to collapse on the 15th and she was placed on an oscillator the next day. She also needed a blood transfusion and a PICC line. By the 19th, Tori was still doing poorly and the doctors needed to try something else. They put her on isoflourine gas and a ventilator. On October 23rd, Tori came off of the ventilator and came out of her coma. She then had her first stay at Mt. Washington Pediatric Hospital to rehab from being in the coma (as well as dependency on narcotics from the coma).

On May 30, 2008, Tori needed her Nissen redone again because she was aspirating again. Everyone was extremely nervous, but Tori did well. She needed 17 days to recover, but came home on Father's day. While we were in the hospital, Tori complained of headaches. Her shunt was looked at, but the doctors did not want to operate.

On July 6, 2008, Tori went to the ER because she complained of severe pain in her abdomen; it was discovered that her incision was infected. Her temperature when we arrived was 102 degrees. The doctors cleaned her incision and sent us home. That infection ended up being MRSA and she had another staph infection in her shunt. Tori had to have her shunt externalized on July 15. Tori's tests continued to come back positive for staph, so on July 18, she had a temporary shunt inserted. By August, Tori had everything put back together and was discharged on August 15. During the diagnosing of the shunt problems, Dr. Ahn, Tori's neurosurgeon, discovered that she had a Chiari Malformation. We were told that this could be what was causing all of Tori's swallowing problems.

On October 13, one year after she had the surgery that put her in the coma, Tori had Chiari Decompression Surgery where her first vertebrae and part of her skull were removed. Tori recovered well from the surgery however, it took a long time for her stomach to get adjusted to feeds.

Tori returned to Mount Washington Hospital where Dr. Katz could work on getting her feeds adjusted.  On November 4, she had a lumbar puncture that showed her brain pressure was high, and also had a fever of 103.5. Tori was admitted to the PICU for three days where it was discovered she had a life threatening blood infection. She was placed on antibiotics for two weeks prior to the surgery to fix her shunt. The night before Thanksgiving, Tori had emergency brain surgery to move her shunt to a new location in her head.

Tori went back to Mt. Washington to compress her feeds, but it was unsuccessful.  She was also positive for c-diff, a type of intestinal infection. Throughout 2009, Tori continued to have c-diff but stayed on medicine to keep her negative. Another procedure revealed that she had a motility problem in her intestines and continued to have reflux. In December of 2009, Tori was rushed to the ER when we realized she had adrenal gland failure. Tori had her Chiari decompressed again in March 2010 – at which point her intestines decided to fail. She had a central line placed and began being TPN dependent.  Tori spent the remainder of 2010 at Mt. Washington trying to get her body healthy.

One of the major problems was the c-diff, for which Tori had a lifesaving stool transplant procedure. Her sister Brittany ‘donated’ some of her stool, and Dr. Katz worked his magic.  After two procedures, Tori finally became negative for the first time in almost 2 years.

2011 brought a shorter hospital stay. Tori spent two months at Mt. Washington getting ready to begin eating again.  In June, she was finally able to start eating by mouth for the first time in almost seven years. She did great and loved trying all different types of food. It was amazing seeing her at nine years old, experiencing tastes and textures for the first time.

2012 was another long year for us. Tori was found to need another Chiari surgery. When she went for her pre-op physical, the anthesiologist wanted an echocardiogram. During the test, they found Tori had a large right arterial thrombus. After two weeks on bed rest, Tori finally had open heart surgery to remove the clot. The brain surgery was put off until three weeks after her heart surgery. Tori came home from the hospital and went to school the next week for the first day of school.

Tori has had two brain surgeries already in 2013. First she had a new shunt, and then another Chiari surgery. Tori’s Chiari caused her to get a syrinx. This causes her severe headaches and pins and needles in her feet and arms. She had a 4^th ventricle catheter inserted to help drain the fluid off of her brain.  Tori’s headaches continue to bother her on a daily basis. We are currently trying to identify the best course of medicine and procedures to help her.

Now 11 years old, she is on 15 medications a day, and has diagnoses that make her see almost every kind of specialist that Hopkins and Mt. Washington offer. She’s a very complex child who has endured more problems than any person should have – but handles them better than anyone. Tori often asks when will she be a “normal” girl – but of course, in our eyes, she is absolutely perfect.  

Children's Hospital Association CEO Speaks at Atlantic Health Care Forum

On May 1, Children’s Hospital Association CEO Mark Wietecha spoke at The Atlantic Health Care Forum in Washington, D.C., which featured speakers and panels on a range of health care topics. Below is an abridged version of his remarks that frame a discussion on the Affordable Care Act and new models of insurance that address the rising cost of health care: 

The future of health care is like the ocean. We know what the surface looks like but 95 percent of the bottom is unchartered territory. Above the surface there are accountable care organizations, the coming health care Exchanges and a clear orientation to consumerism.

But below there are a host of unknowns at work. For example, will the Exchanges be like Amazon.com or sophisticated enough to change depending on population needs? Will there be continuity if a subscriber moves from one plan to another? At what level of co-pays and deductibles will patients decide to forego care?

As children’s hospitals, our job is to look at the future through the pediatric lens.

Today there are 70 million mostly healthy children in the U.S. - more than the population in some countries in Europe - and 40 percent of them are on Medicaid. That’s 30 million human beings. Millions more children are in the Children’s Health Insurance Program and millions of others will enroll in the Exchanges.

There are numerous positive health care coverage provisions in the Affordable Care Act that benefit children: The removal of pre-existing conditions as a reason for insurance denial; the removal of life-time caps; and the extension of coverage to dependent children up to age 26 are all good signs.

Most kids are healthy and we hope that they grow up wealthy and wise. However, the sickest kids - roughly 2 million children who are born with severe health care challenges or acquire them through a traumatic event – are heavily reliant on Medicaid. What does the brave new world of health care look like for this population of children with medically complex conditions?

First, they will require a range of pediatric services and specialties. A typical HMO model is not going to work for these kids who need continuity of care across providers versus tiering and annual plan changes.

Second, these families travel across state lines to regional care providers for services. As a state-by-state program, Medicaid in its current structure can be onerous, and preventative-oriented Medicaid managed care plans are not the right fit for these kids.

A solution the children’s hospitals and the Association are exploring involves national networks of accountable care for medically complex children to ensure continuity across state lines, establish quality measures and collect data on this population into a national database in order to continually improve on that care.

As a matter of economics, the Affordable Care Act is heavily focused on adults in the health care system. However, we cannot let kids slip through the cracks, especially the most vulnerable among us.

Medicaid Matters for Kids Briefing Series Continues with “CHIP 101: Past, Present and Future”

On May 2, the Association, in cooperation with the Children’s Health Care Caucus, hosted its second briefing, “CHIP 101: Past, Present and Future,” in the four-part Medicaid Matters for Kids series. The briefing provided congressional staff with an overview of the Children’s Health Insurance Program (CHIP) and how it will fit into the future of the health care system. The briefing was also sponsored by the American Academy of Pediatrics, Family Voices, First Focus, Georgetown Center for Children and Families and March of Dimes.

Panelists included:

• Robert Hall, JD MPAff, Associate Director, Department of Federal Affairs, American Academy of Pediatrics
• Elisabeth Wright Burak, Senior Program Director, Center for Children and Families, Georgetown University Health Policy Institute
• Marsha Dendler Raulerson, MD FAAP, Chair, American Academy of Pediatrics Committee on Federal Government Affairs
• Bruce Lesley, President, First Focus

Robert Hall, who served as the moderator, opened the briefing by providing an introduction to the CHIP program. CHIP is a block grant of funds given to states to help cover the cost of insuring the almost 8 million low-income children with families who have income too high to qualify for Medicaid but too low to find affordable coverage. Since the program’s reauthorization in 2009, CHIP has also provided funds for quality measurements which are the only federal investments in pediatric quality care. Each state’s CHIP program has great flexibility in terms of defining the program design, benefits and eligibility, yet each state program helps fill two critical needs: affordable coverage and quality measurement in pediatric care.

The first panelist was Elisabeth Wright Burak. Ms. Wright Burak provided background on the success of CHIP and Medicaid in ensuring health care coverage for children. According to data from the Georgetown Center for Children and Families, the children’s uninsurance rate has declined from 8.6 percent in 2009 to 7.5 percent in 2011, even as the rate of child poverty has increased in recent years. “In the months and years ahead, it will be vital to sustain and build on the success of CHIP and Medicaid in covering children,” she added.

Dr. Marsha Dendler Raulerson, the second panelist, offered her valuable insights as a pediatrician in rural Alabama. Alabama’s CHIP program, ALL KIDS, was the first state program implemented. As of this March, 85,443 children in Alabama were covered by ALL Kids, contributing to an uninsurance rate of less than 5 percent of children across the state. Dr. Dendler Raulerson has also witnessed the impact of the ALL Kids program on the lives of many of the patients she serves, who can now receive regular check-ups, immunizations and dental and vision care with no co-pays.

Bruce Lesley served as the third and final panelist and represented First Focus, a bipartisan children’s advocacy group in Washington. Mr. Lesley emphasized CHIP’s history of strong bipartisan political and public support, although he noted that the public often is unaware of the great success of the program in significantly reducing the number of uninsured kids. “It’s an amazing story that’s happened everywhere across the country,” he said. Mr. Lesley also reiterated the message that CHIP plays an important role in ensuring that specific attention is paid to how children receive care since they have unique health needs. He added, as health care reform continues, it will be important to ensure that kids also make the transition and are able to access quality care.

For more details on the two remaining briefings in the Medicaid Matters for Kids series, please visit www.childrenshospitals.net/medicaidmatters.

Time For a Budget Update

A quick (and simplified) refresher on how the federal budget process is supposed to work:

On the first Monday in February, the president releases a detailed budget request for the upcoming fiscal year. It recommends how much money the federal government should spend and what it should spend it on. It also articulates how much the government should take in as tax revenues. From there, the House and Senate each come up with their own blueprint, then spend the year working on an agreement which is finalized by October 1.

Now take that paragraph above (which is probably what you learned in high school civics and Schoolhouse Rock) and toss it into the round file. It has been ages since the process was that simple. Instead, partisanship, gridlock, and other issues have caused the budget process to break down. Blame can be assigned to both Houses of Congress as well as both parties; until this year, the Senate hadn’t produced a budget since 2009. The Republican-controlled House passed budget resolutions spearheaded by Rep. Paul Ryan (R-WI, and former vice presidential candidate) that had no chance of passing the Democrat-controlled Senate. Long story short, Congress was forced to continually adopt stopgap spending measures to keep government programs running while never actually finalizing a budget.

This brings us to 2013, the most unusual budgetary year in some time. Let’s review in timeline format:

February 4 (first Monday in February): The president’s budget is normally released on this date, but no one inside the Washington, D.C. beltway expects a budget proposal before March. Congress and the president are still extricating themselves from the fiscal cliff, and it would take some time to run the numbers and create a new budget. They also need to attempt to stave off the across-the-board cuts known as the sequester.

March 1: Unable to reach a compromise, the sequester takes effect, triggering $1.2 billion in cuts spread over nine years.

March 15: Paul Ryan introduces his budget blueprint. Very similar to his 2012 budget proposal, the plan again calls for converting Medicaid into a block-grant program for states, and repeals the Medicaid expansion, exchanges, and other provisions that were passed as part of the Affordable Care Act.

Also on March 15, the Senate Budget Committee begins work on the Senate’s first budget proposal in four years. The proposal includes an important amendment offered by Sens. Bill Nelson (D-FL), Chris Coons (D-DE), and Tammy Baldwin (D-WI) that would help advance care for medically complex children under Medicaid.

March 21: The House passes the Ryan budget by a vote of 221-207. The Senate votes on – and overwhelmingly rejects – the Ryan budget the same week.

March 22: With a government shutdown looming, Congress passes a bill to fund all federal programs through September 30 (freeing them from having to reallocate all the money). Most programs, such as the Children’s Hospital Graduate Medical Education program (CHGME) are funded at last year’s levels in the bill – however, because of sequestration, each program is subject to a five percent cut (and possibly more, depending on how much discretion individual agencies are able to apply in implementing the the cuts. Confused yet? So was Washington. And we’re still waiting to find out officially what final FY 2013 funding for CHGME and other programs will look like. (Medicaid, fortunately, is not subject to sequestration cuts.)

March 23: The Senate narrowly passes its budget proposal by a vote of 50-49. The Senate’s budget proposes $10 million in Medicaid cuts, but takes care not to hurt current beneficiaries or jeopardize expansion of the Affordable Care Act.

April 10: The president releases his budget proposal; a bit of a moot point as both the House and Senate have passed theirs, but it does reveal some of the administration’s policy ideas. The president’s proposal avoids short term Medicaid cuts, but – as it did in 2012 - recommends $88 million for CHGME, just one-third of the current funding for the program.

And that brings us up to date. Congress will now begin sort out specific funding amounts for all federal programs, including Medicaid and CHGME. Recently, a group of 26 senators signed on to a letter supporting CHGME funding, as did 138 representatives. As the appropriations process heats up in the coming weeks, we’ll be asking you to reach out to your legislators as well through our Legislative Action Center.

Braelyn's Story

By LaKeesha Hines

LaKeesha Hines and her son, Braelyn, represented St. Joseph’s Children’s Hospital in Tampa, FL, at our 2010 Family Advocacy Day. Braelyn, who was born healthy but contracted bacterial meningitis as an infant, had been under St. Joseph’s Children’s care nearly his entire life at the time he attended Family Advocacy Day. Medicaid has covered a significant portion of the intensive care he requires. LaKeesha graciously shares what Medicaid has meant to Braelyn’s recovery and well-being.

When I was first pregnant with Braelyn, I was a mother of a 6-year-old, in a long distance relationship, working full time and attending college part time. I felt joyful, excited and fearful. I was afraid because I knew it would be tough having a newborn with my extremely busy schedule. But because of the joy and excitement I felt about having a life growing inside of me, I made preparations for my unborn child. My boyfriend at the time, now husband, was also working full time and was a full-time college student in another state. Therefore, he had some fears as well, primarily about the financial responsibility a baby would bring.

I had a normal pregnancy but ended up having an emergency C-section because my blood pressure dropped and my baby’s heart rate dropped significantly during delivery. Braelyn was born weighing 8 pounds, 3 ounces and was 21 1/2 inches long. He was completely healthy and we both were fine. But, when my son was 5 1/2 months old, he was hospitalized for meningitis. He spent more than six weeks in the hospital, more than half the time in the intensive care unit. He suffered from uncontrollable seizures, two strokes and he was unable to breathe on his own. I witnessed him stop breathing twice and nurses had to resuscitate him. Ultimately, he ended up having a “VP shunt” placed to drain fluid from his brain and a “G-tube” placed to deliver nutrition directly into his stomach. I remained at my son’s bedside the entire time. While our families did not live close by, they tried to come whenever they could. Unfortunately, they could not afford to travel often.

When we finally went home from the hospital, I was still pumping so my son could benefit from my breast milk. I was able to get a loaner pump as I could not afford to buy one. He had six different doctors: a pediatrician, an infectious disease specialist, a neurologist, a neurosurgeon, a developmental pediatrician and a gastrointestinal doctor. His neurologist wrote orders for him to begin physical, occupational and speech therapies while we were still in the hospital. The therapies continued after we were discharged. My son was basically a vegetable. He did not laugh, smile, cry or seem to feel pain. When I was pregnant, I dreamed of how my baby would be and of the type of man my son would become. Because of this tragedy, my hopes, dreams and aspirations for my son all died. I felt lost and confused. Suddenly I was thrust into the world of caring for a disabled child. I also worried I would not be able to afford to take care of my child or to pay for the care he would need for the rest of his life.

After years of aggressive therapy, weight management, finding the right combination of medications and receiving consistent quality health care, my son is thriving.

If it had not been for Medicaid, I would not have been able to afford the breast pump that allowed my child to receive those very important antibodies found in my breast milk or the surgery to install the G-tube which allowed him to receive the milk into his stomach. I would not have been able to afford the health care or the therapies that have aided in his recovery and have contributed to Braelyn’s opportunity at a quality life. Medicaid has allowed us to provide Braelyn with a wheelchair, glasses and diapers, which he continues to wear to this day. Medicaid has also allowed my son to receive aquatic therapy which has helped to improve his motor skills. Thanks to the quality care he received by way of Medicaid, my son was finally able to walk on his own at 6 years old.

It is extremely important for everyone who has never received Medicaid to know it is not just in place to help those who are low-income, but for children who are chronically ill and require more intense, quality care than the average child. Because I know my child will continue to need assistance above and beyond what the average child will need, I am praying Medicaid continues to exist. I am extremely thankful for Medicaid and know without a shadow of a doubt that having it aided in giving my son the opportunity for a rich, fulfilling life.

Medicaid Matters for Kids Briefing Series Begins on the Hill

On Feb. 22, the Children’s Hospital Association kicked-off its four-part Medicaid Matters for Kids briefing series with Medicaid and Kids 101. The briefing gave congressional staff a “101,” or basic understanding, of Medicaid’s structure, including: who the program serves, what types of services it provides, and how it is financed. With Medicaid covering more than one in three children nationwide, the information provided to Hill staff comes at a critical juncture as the program remains vulnerable to cuts as a means to alleviate budget pressures at the federal level. The panelists touched upon the Affordable Care Act (ACA)’s change of eligibility and its effects on children.

Cynthia Pellegrini, senior vice president for public policy and government affairs with the March of Dimes, opened the briefing as moderator, emphasizing how important Medicaid is to all children, providing services across all spectrums regardless of diagnosis or income.

The first panelist, Joan Alker, co-executive director Georgetown Center for Children and Families, set the context of the briefing. According to Alker who cited data from Georgetown Center for Children and Families, children make up 50 percent of the beneficiary group within Medicaid but only take up 20 percent of the cost. Although uninsured children are below national averages, red tape increasingly bars children that are eligible for Medicaid from being insured. Alker explained that as the ACA expands eligibility within the Medicaid system and more people are insured through Medicaid and the Exchanges, children too will gain more coverage.

Stan Dorn, J.D., senior fellow with the Urban Institute, followed Alker, presenting on data from the Institute on which children are covered by Medicaid and how they qualify. Dorn stated that 46 percent of all American births are covered by Medicaid, emphasizing that mothers covered during pregnancy can significantly increase the chances children are born healthy, reducing post-natal costs. According to Dorn, three-fourths of children covered by Medicaid have at least one parent employed either part or full time. Dorn stressed that Medicaid is not just for the poor. Medicaid can provide supplementary coverage to families with private insurance that may not cover all service required for their child’s care. Medicaid is also critical to children with special health care needs, providing them with lifesaving services.

The third panelist, Andrew Urbach, M.D., Associate Medical Director for Clinical Excellence and Services with the Children’s Hospital of Pittsburgh of UPMC, presented on the unique role children’s hospitals play in providing care for all children. According to Urbach, an average of 53.5 percent of patients at Children’s Hospital of Pittsburgh is covered by Medicaid, which only reimburses 77 percent of costs in the state. Children’s hospitals take pride in not only caring for sick children but also caring for families, providing services for siblings and parents while their child is in the hospital. Children’s hospitals also play a unique role in providing care to children throughout the country. In 2012 alone Children’s Hospital of Pittsburgh of UPMC treated children from more than 40 states. Urbach left a lasting impression upon staff, stating “Medicaid protects our most vulnerable population—children.”
The final presenter, Jana Monaco, discussed how vital Medicaid has been to her family, particularly to her son, Stephen. When Stephen was diagnosed at 3 years of age with an inborn error of metabolism, isovaleric academia, the Monacos could not forsee how critical Medicaid would be to Stephen’s long term care. While the Monacos are covered by private insurance, it does not cover every service or piece of equipment Stephen required, such as his wheelchair, feeding supplies and respite care. Jana stressed how Medicaid has enabled her and her husband to continue to care for their other children without worrying about burdensome medical debt.

More than 90 congressional staffers and organizations attended the event, making the briefing a success in getting the message out: Medicaid matters to kids.

This briefing was the first in a four-part series dedicated to exploring how Medicaid matters to kids’ health. Medicaid Matters for Kids features national pediatric policy experts addressing topics such as the basics of Medicaid and the Children’s Health Insurance Program (CHIP), and cost-saving innovations in delivery system improvement. For more details on upcoming briefings, visit www.childrenshospitals.net/medicaidmatters.

The briefing series is sponsored by Children’s Hospital Association, First Focus, American Academy of Pediatrics, March of Dimes, Georgetown Center for Children and Families and Family Voices in cooperation with the Congressional Children’s Health Care Caucus. 

Medicaid Matters for Kids - Simone's Story

Simone spent more than a year in the hospital after her birth and has had many more visits since due to various illnesses and for surgeries due to craniosynostosis, a skull deformity; tracheomalasia, a floppy airway; and cystic fibrosis (CF), a chronic lung disease.  Because of her fragile lung status, she has a tracheostomy (a surgically created opening in the neck leading directly to the trachea) and requires oxygen and mechanical ventilation at night. Last January, Simone suffered a severe stroke during surgery and was paralyzed on her right side. With the help of therapists at Mt. Washington Pediatric Hospital, Simone has regained most of what she lost. We were honored to have her join us for Family Advocacy Day in 2012, and recently reached out to her mother, Shannon, for an update as part of our Medicaid Matters for Kids Month. 

When did your child first go on Medicaid?
Simone first went on Medicaid in June 2010, when she came home after spending the first 13 months of her life in the hospital.

How does Medicaid make a difference in Simone’s care?
The primary way we participate in Medicaid in Maryland is through the Model Waiver program, which is also known as the Katie Beckett waiver, created by President Reagan in 1981. Katie Beckett’s family advocated and paved the way for sick children, like their Katie, to go home from the hospital and receive care at home without losing federal support, and saving federal dollars all at the same time. In Maryland, we’re extremely lucky to have one of the 200 slots. There is a waiting list based on need. The Becketts were so brave and smart to advocate that it’s healthier and less costly to have children with serious health issues — but who are stable — live at home. While being in one saved Simone’s life numerous times, a hospital is no place to live permanently. Simone’s infection risk with CF is high so being home is ideal. Her development since being out of a hospital bed has progressed beyond our wildest dreams. She knows over 100 signs using American Sign Language, knows all of her letters and is a very funny, loving girl.

Through the Model Waiver, Medicaid fills in the gaps where our private insurance falls short. One of the biggest gaps is nightly nursing. Simone requires a nurse to monitor her ventilator and feeding tube while she sleeps. It's an active night from 8 p.m. to 6:30 a.m. The nurse gives Simone five nebulizer respiratory treatments through her tracheostomy tube which takes about 1-1.5 hours. She ensures Simone is fed continuously through her gastrostomy tube (g-tube), provides multiple medications via g-tube at three intervals in the night, and transfers her to a ventilator and oxygen. Throughout the night we can hear Simone coughing and her oxygen monitor and the ventilator will alarm. The nurse will provide physical therapy to her chest to loosen her phlegm, suction her, and gave her an albuterol treatment. We can sleep. And in the morning, I’m able to be her day nurse and her mother.

What would happen if Medicaid services were reduced or cut in your state?
Without Medicaid, our lives would be dramatically different. If we had to pay for nursing out of pocket, it would exhaust our financial resources quickly. One of us would have to be up with her every night taking care of her and the emotional and physical toll would be unmanageable. We have had our share of nights without a nurse and while we make it work, it is amazing how quickly "normal" life devolves.  Since my husband travels most weeks for work, he’d have to leave his position and find work locally, probably for less money and changes to health insurance. I am currently looking for a job but this would need to be put on hold as my "job" would be to function as her nurse at night too. As far as Simone, I’d like to think we could handle her illnesses on our own but the reality is she’d probably spend more time in the hospital, away from family, friends and normalcy. Having a health professional in the home not only provides much needed relief to the parents, they are another set of expert eyes and hands, able to assess and care for her health daily, assisting during emergency trach or g-tube changes, and strategizing with us about all aspects of her care.

Before having Simone, I didn’t know much about kids with special medical needs. I had no idea of the absolute all-encompassing effort it takes to care for a sick loved one. Even though we made it home from the hospital, we have a mini hospital at home. It’s a marathon and is relentless, requiring coordination and constant diligence to keep her well on the part of her parents, her doctors and her nurses at night. Because of the CF, when she gets sick it can be quite serious and for her it can mean going back in the hospital. She’s on oral antibiotics constantly but she is also able to receive IV antibiotics at home. She sees 12 pediatric specialists and four therapists (speech/feeding/OT/PT). Simone will probably need one more surgery —open heart surgery to remove a growth—and she will battle CF for life. We feel confident that we won’t need Medicaid for very much longer, but it has been an absolute lifesaver for us.

Sometimes after Simone gets up in the morning she falls asleep again in my lap. I look down at her and wonder why she has to go through so much. I really don’t think there is an answer. But I do think that people like Simone give us the opportunity to show us how good we can be—as parents, as nurses, as doctors, and as a society. She is a very happy child. I think we’re doing good work. For Simone and friends like her, I hope this program will continue to be improved and strengthened. Medicaid is working for our family, as a safety net, filling in the gaps where private insurance lets us down. So when people make decisions about Medicaid, we hope they remember families like ours.

Medicaid supplements your private family coverage, correct?
Simone represents a population of people who participate in the Medicaid program because our private, primary insurance is not sufficient —it serves as a wrap around our primary insurance.  For the last two and a half years Medicaid has been a safety net for our family. It’s helped Simone stay healthy and out of the hospital, and our family together. Our primary insurance only pays for 90 days of night nursing each year. Without Medicaid, by the end of March, we would have used up all of our nursing coverage for the year. But in April, Medicaid kicks in and covers a night nurse for the next nine months of the year. There are also some therapies that our private insurance does not cover that Medicaid coverage has allowed her to receive.

In the year since you attended Family Advocacy Day, how has Simone’s condition changed?
Simone recently began attending school and as wonderful as this is for her developmentally, like any other typical child, she is sick often as a result of new germ exposures. She has had to be on many more medications, miss a lot of school and has had many sleepless nights as her lungs have been compromised by the numerous infections. To see her in the day time though, you wouldn't know it as she remains a vibrant, shining, loving little person!