While on vacation in Puerto Rico earlier this year, Miabelle began having diarrhea. After a week she began to show signs of discomfort (crying) and a reluctance to eat. The following day, fever set in. She began spiking temperatures of 102+. A day passed and the fevers continued, she was vomiting and the diarrhea persisted. We made a few trips to the ER during this time, but there was no pediatrician on staff. Vanessa and Miabelle then returned to New York so Miabelle could receive proper medical attention.

Upon arrival, she was rushed to the hospital with a temperature of 104.7F (40.4C). She had been crying for days and nights, her pain showing on her pale face. She was inconsolable and unable to eat or drink. She was started on antibiotics for a Urinary Tract Infection (UTI) and Ecoli in her urine. Xrays and CT scans of her belly and chest revealed fluid throughout her abdominal cavity and right lung. We were informed that she had a very rare bacterial infection in her blood called Pseudomonas Bacteremia (aka the hospital bacteria). To quote the doctor: "Thank God you brought her in when you did because another 24 to 48 hours could have been tragic".

The following day she was also diagnosed with the Adeno virus in her stool. So, Ecoli in urine, Adeno in stool, and Pseudomonas in blood. Needless to say her body was in shock trying to battle all of these infections. Still today the doctors scratch their heads over how an otherwise healthy baby could have contracted so many bacterial infections, the most difficult to explain is the Pseudomonas.

She was started on a two week regimen of antibiotics. On day 3 she received a platelet transfusion, and on day 5 a Red Blood Cell (RBC) transfusion. It took nearly 7 days before we began to see any positive signs of improvement from a medical standpoint as well as in her temperament. She began smiling and waving. By the end of her second week the central line was removed and completing a 2 week antibiotic regimen; she was discharged on February 6th.

Unfortunately, within 24 hours of her discharge we rushed her back to the Pediatric ER with a fever of 104.3F (40.17C). They immediately hooked her up to an IV and took urine, stool and blood samples for testing to see if the bacterial infections were back. Thankfully, all tests came back negative. The next 2 days were more of the same. We rushed her into NY Presbyterian Children's Hospital Emergency Room, rated in the top 5 of the country for pediatrics. By the time we arrived in the Emergency Room she was running a constant fever of above 104+F (40+C), and Tylenol was no longer working. Her vitals were weak and she was crying from pain and exhaustion.

Over the next week, Miabelle underwent more testing and examinations than most people will ever undergo in their entire lifetime. She was subjected to 5 IVs, twice daily blood draws, round the clock monitoring, multiple Xrays, Ultrasounds, CT scans, Echocardiogram, Tuberculosis and HIV tests, Epstein Barr, etc, etc. And was seen by every specialist from Pediatrics, Liver Specialists, GastroIntestinal, Infectious Disease, etc, etc. On Sunday, February 13th we were informed that everything was coming back negative for viruses and infections, and all indications were pointing to a rare disease known as Hemophagocytic Lymphohistiocytosis (HLH).

On Tuesday, February 15th, everything changed. Miabelle began showing signs of Neurological complications. Her left eye was deviating and both eyes were rolling back into her head and showing signs of difficulty readjusting. She was unable to move her eyes to the left and she seemed to have no control over her hands. Doctors performed a biopsy, spinal tap and put in a PICC line in order to draw blood and administer medications. She was sluggish and weak and the neuro complications were becoming increasingly persistent and more noticeable.

Thursday at 12:30pm, Miabelle underwent her second surgical procedure in 2 days. At first glance everything looked normal. But given her obvious and seemingly more prominent neurological findings, a closer assessment was necessary. On Friday morning, the day before her 1st birthday, the doctors informed us that she had 7 of the 8 indicators for HLH. She began an 8 week chemotherapy treatment that night intravenously along with a protocol of steroids and immune system suppressants. They submitted her blood for HLA typing to be able to identify a marrow match.

On Saturday, February 19th, Miabelle and Noelie turned 1. Family and friends stopped by throughout the weekend to see how she was doing and Miabelle did well. Her blood levels began to normalize and the side effects of the chemo and steroids were minimal. Her neurological issues dramatically improved as well, and she was able to make eye contact, laughing and smiling with her visitors. Please see Miabelle’s blog for the latest on her medical condition.