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Clayton girl in need of heart/lung transplant inspires community spirit Andre’ Gensburger There can be no news more devastating than to be told that your 5-year-old daughter has a fatal disease and should, by all accounts, already have died. This was the news that Kathy and John Groebner received in November 2007, after years of being deferred by their doctors in Mankato, Minn., with diagnoses far removed from the ultimate determination of idiopathic primary pulmonary hypertension. This rare and life-threatening condition affects one out of 3 million children with symptoms often misdiagnosed as lessthreatening ailments such as asthma. The Groebners had taken Katie Grace to have a hole in her heart repaired with an outpatient procedure using a surgical line threaded up through her groin and a second threaded through her back. No hole was located and the actual condition of Katie Grace’s heart and lungs was revealed. The news was shocking. “No one believed us that something was wrong,” Kathy said. A lifetime of problems From the time she was born prematurely, Katie Grace had always been sick and weak, with episodes of passing out. The family doctor deferred further testing. “Even in his records, he wrote: ‘Mother compares child to older sibling’ and that he told me ‘Not all children are the same,’ ” Kathy said. “When she

passed out, they said it was acid reflux.” The doctor prescribed Prilosec to reduce stomach acid. It was only when Katie Grace was 3 and showing slower development of motor and cognitive skills that there were other tests, but most showed nothing conclusive. She was assigned a physical therapist, who thought Katie Grave was having seizures. However, tests proved negative. One gastroenterologist noted in a letter to the family doctor that she had a 1/6 systolic murmur at the base of the heart, but “the doctor said a lot of children have heart murmurs and grow out of them,” Kathy reported. Yet each time Katie Grace would get sick, simple illnesses like a cold would become complicated and require hospitalization. In November ’07, the 5-year-old started a preschool readiness class three days a week to help her catch up. The family began to notice a serious decline in her ability to stay alert and focused, and Katie Grace would get irritable and exhibit stress-related patterns such as thumb-sucking. “That Thanksgiving, we went into the doctor as we were all sick and our doctor was gone,” her mom said. Another doctor diagnosed pneumonia and started antibiotic treatment until a newly licensed doctor contraindicated the pneumonia diagnosis due to negative lab tests. Instead, he prescribed a cough syrup to help her congestion and difficulty breathing while he conducted more tests. “Two days later he called – he didn’t want to tell me on the phone,” Kathy said. “Her heart was so significantly enlarged that he had called an immunologist and a cardiologist to look at the results and the imaging.”

An echocardiogram did not show anything, however, based on the symptoms and the lab work, it was suggested that a hole was present that needed to be closed – solving all the problems. Getting to the right diagnosis Instead, it was the start of further problems. Although Katie Grace was awake and chatting with the doctor during the procedure, the doctor told Kathy: “By all rights, she shouldn’t be alive right now.” Katie Grace had an enlarged heart, with major bronchial arteries closed, inhibiting the ability of her lungs to receive enough oxygen. Attempts to open the arteries failed. That was when they were told she would need a heart and lung transplant. “They said there were no places in the area. Nothing in Minnesota could help us.” Then, guilt set in. John’s aunt had lost a child to pulmonary hypertension and the hint of a genetic link made him feel responsible. Kathy, who had endured difficult pregnancies with her three other children, blamed herself. The family was referred to Stanford Medical Center and Dr. Jeffrey A. Feinstein, associate professor of pediatrics and cardiology, as well as the associate director of pediatric and congenital cardiac catheterization. Feinstein has several ongoing clinical trials including, investigation of a new oral therapy for pediatric pulmonary hypertension. In March 2008, the family made a trip to Stanford to have a Broviac catheter installed into a vein near Katie Grace’s heart. Then, medicines could be administered on an ongoing basis to

help control the dilation of her blood vessels as well as control the pulmonary hypertension. Myriad complications Back home again, she developed a fever in May. With limitations on medications and how high a fever she can handle while using the Broviac, the family struggled to get her admitted to the hospital. Seeing his daughter listless and her fever rising, John carried her into the emergency room and was initially ignored until the family made a scene and Katie was having convulsions. Her fever had spiked to 106 degrees and she was admitted. During the seven days in the hospital, there were many issues which the family has yet to resolve. An IV needle popped a vein and led to swelling of her abdomen. Two days later, a doctor said she had a bladder infection and was going to send her home. After the family’s protest, a nurse called nearby Children’s Hospital, which admitted Katie Grace with a severe kidney infection and elevated white blood count. There she was diagnosed with bladder reflux, a condition that allows urine to back up and infect the kidneys. To compound issues, hospitals are wary of touching the Broviac unit. “If she gets an infection while using the unit, it can be fatal,” Kathy said. The family sold anything they could not take, put their house on the market, bought an RV and set off for California. Before they left, their community held a fund-raiser to help pay medical costs.

While living in the RV in California, Kathy stopped at a flower shop to send some flowers to a family member. Unable to contain her emotions, Kathy began sobbing uncontrollably and told the store owner her story. This connection led to a local church group, and a Clayton family offered the Groebners the use of a two-bedroom guest house. A posting on local Blog site Claycord.com led to more community support. The treatments have been lowering her arterial blood pressure to promising levels. “The longest surviving person on this medication has lasted 20 years,” Kathy said. “That will make Katie Grace 26 years old. It is still not a high quality of life. She can’t bathe herself, can’t have kids, can’t run …” And with no timeframe for a transplant, life is very much one day at a time. At her age, a transplant carries a lower life expectancy and a higher failure rate compared to the medication. Holding the family together Katie Grace attends kindergarten at a local elementary school this year. “I have to let her go to school,” Kathy said. “I have to give her everything I can to make the quality of her life the best it can be.” Savanha, Katie Grace’s 9-year-old sister, is caught in the shadow of the illness. “I take it pretty well,” Savanha said. “It makes me aware of what she has and what she doesn’t have. I get to watch my parents mix the medicine that she will get. Next year, when I am 10, they will show me how to do it.” The medicine arrives by FedEx, with different medications that have to be mixed properly for the Broviac unit to dispense. In

addition, she takes a set of pills which have side effects. There are dual fridges for medications as well as food and a strict regimen on how to clean the countertops and preparation area. “The medication costs between $10,000 and $30,000 per month,” Kathy said. Right now, they are covered by MediCal. Meanwhile, the family car is on loan to an elderly aunt with chronic obstructive pulmonary disease who lives in the San Pablo area. “People ask my husband why he gave her his car,” Kathy said, “and he tells them that she is 61 with COPD, which would be dangerous for her if she breaks down. If he breaks down, he can walk.” Still, the family strives for normalcy. “One day, we hope to be able to buy a house,” Kathy said. “I want to provide a place for other families who are going through what we have been going through.” Katie Grace’s thoughts turn to Christmas, announcing that she wants a playhouse but quickly switches her choice to a giant snow globe that blow snowflakes around. “Did you see my room?” she asked. There, she hangs from the bunk bed ladder, then points to a picture of Orlando Bloom from “Pirates of the Caribbean.” “I’m going to marry him,” she said. Kathy has heard this before. “Where will you marry him at?” she asked. Katie Grace’s eyes light up and she breaks into a huge smile, exposing missing front teeth. “At Coldstone (Creamery),” she said. For more information about Katie Grace, visit http://caringbridge.org/visit/katiegrace or phassociation.org. Donations can be made to the Katie Grace Benefit Fund

through US Bank at www.usbank.com. The family accepts emails at [email protected].