The Isabella Rose Foundation was founded in June 2016 after the inconceivable passing of Isabella (Izzy) Rose Simpson in March 2016 at just 14 months of age. In 14 months of life Izzy didn’t have much of an opportunity to create a legacy, or so we thought. Her purpose and legacy weren’t created in life they were discovered after her untimely death and both are far greater than we could have ever imagined.
“There is no foot so small that it cannot leave an imprint on this world”. Author Unknown
Isabella Rose Simpson was born Wednesday January 21, 2015 at 1:09pm. She weighed 6lb 6 oz., measuring 18 ½ inches long. From the beginning Izzy had remarkably big beautiful eyes and eyelashes. Becoming parents is the most was what we wanted most in our lives and when Izzy arrived our lives finally felt fulfilled. Fast forward to Izzy’s 2-month check-up with her Pediatrician, Dr. Judy Pendleton. She made the comment about Izzy looking a bit jaundiced, so the same day Izzy had blood drawn. The next morning, we received a call from Dr. Pendleton, she received the blood work results and Izzy’s bilirubin levels where elevated. We were asked to take her to the emergency room at Phoenix Children’s Hospital (PCH). When we arrived at the emergency room we were immediately rushed to the front of the line. The doctors attempted to explain all of the possible reasons why Izzy’s bilirubin levels were elevated. Dr. Pinar Bulut from the Gastroenterology Department greeted us and said one of the possible diagnosis was biliary atresia, a rare liver disease with no known cause or known cure. We were told Izzy would undergo a biopsy to test her live for Biliary Atresia and determine if the Kasai procedure (operation connecting the liver directly to the small intestine, bypassing the biliary ducts) was needed or if her bile ducts were blocked and needed to be unblocked. After the biopsy was performed and further tests were conducted, the liver team determined that the Kasai procedure was needed. Infants who undergo the Kasai procedure have roughly a 70% chance of experiencing liver failure and requiring multiple liver transplants in their lifetime.
On March 26, 2015 at 4pm Izzy went into surgery. About 2 hours into the biopsy/surgery we were told she had Biliary Atresia and the Kasai would be performed. It was just about midnight when Dr. J. Craig Egan (Izzy’s surgeon), informed us that all had gone well. Izzy was on her way to the Pediatric Intensive Care Unit (PICU) for recovery. Even though at that moment we felt every emotion simultaneously, we raced up to the PICU to see our Izzy. After 10 days, we were discharged from PCH sent home. Aside from a high calorie diet and taking 5 medications daily (some of them twice daily) Izzy went home a normal happy baby. Izzy had to see Dr. Bulut every 2 weeks to start and after a while she was doing so well her visits were every 2-3 months. In January of 2016 Izzy started having fevers. We thought she was coming down with a cold or was teething. She didn’t really show any other symptoms, so we would give her baby Tylenol and eventually the fever would subside. Izzy saw her pediatrician three times in January and we were told a viral infection was most likely the culprit. Eventually we were told to take her back to PCH so she could be checked by her gastroenterologist. Izzy was diagnosed with a Rhinovirus and Giardia. After 4 days in the hospital we were sent home. On February 12th four days after Izzy was released from the hospital, Izzy suddenly gave out a scream we had never heard before. It was a very unusual cry, different from any cry we had heard before. Her right eye started twitching rapidly, we thought something flew in her eye. Convinced it was more than just eye irritation we decided to take her to the closest hospital, Chandler Regional Hospital. After about an hour and a half at Chandler Regional Hospital, they decided the best place for her was at PCH. The neurological team conducted an MRI on Izzy and it revealed she suffered a massive stroke. Needless to say, we were heartbroken and terrified.
As Izzy started to show signs of slight recovery from the stroke the fevers came back and before we knew it Izzy had difficulty breathing. Her breathing was so labored the doctors put her on an oscillator (a type of ventilator). Finally, after running nearly a dozen different tests over the course of 4-5 days the Infectious Disease team diagnosed Izzy with disseminated coccidioidomycosis (valley fever). We would come to discover valley fever is more than a disease found in dogs, it is an airborne fungus and if inhaled can terrorize your lungs and turn into a lifelong chronic disease. If the cocci (valley fever) disseminates like it did in Izzy it can get into your blood stream and eventually your brain where a meningitis diagnosis is almost inevitable. After a while the oscillator Izzy was hooked up to started to do more harm than good. It started puncturing her lungs so the decision was made to put her on a lung bypass machine also known as Extracorporeal Membrane Oxygenation (ECMO) to allow for her lungs to heal. Izzy eventually was covered with a rash and the twice daily x-rays of her chest hadn’t shown any improvement in weeks.
We were told if Izzy recovered enough to go home there was a good chance she would be administered a bone scan and because her case of valley fever was so intense she would more than likely go home with a meningitis diagnosis as well. Despite all the efforts from the PICU staff and endless prayers, the Valley Fever was too much for Izzy to overcome and on March 23rd, 2016 after 40 days and 40 nights Izzy’s fight was over. It was exactly 1 year to the day that we had taken Izzy to see Dr. Pendleton (her pediatrician) for her 2-month checkup. We were going home again, only this time it was without Izzy. It was during the darkest moments of our lives we (Steven and Carol Simpson) decided to take action.
When you’re in the hospital with a significantly ill child there isn’t much for you to do, but sit and wait. We conducted some research and found some eye-opening information on the Arizona Department of Health Services website about valley fever, “Valley fever is an infection caused by a fungus that is found in the soil of the southwestern United States, and parts of Mexico, Central and South America. People become infected after inhaling fungal spores made airborne by disturbance of soil by natural or human activity. It is not contagious and cannot be transmitted from animals to humans. Sixty percent of infected persons experience no or mild symptoms. The remaining 40% experience a self-limited respiratory disease with symptoms such as fever, cough, fatigue, chest pain, shortness of breath, and rash. In less than 5% of people with symptoms, it can cause severe respiratory disease or disseminated disease outside of the lungs requiring treatment with antifungal medication. Treatment may need to be continued for many months or possibly for life. There is no vaccine and preventing infection is difficult” (Arizona Department of Health Services, 2016). Our research taught us a few things, pediatric valley fever research and awareness were relatively non-existent, testing for valley fever often takes place in California or Utah, can take up to 1 week to receive results, and is massively underfunded.