Olivia Paige Goldberg was born October 26, 2009 in Roanoke, Virginia to Howard and Emily Goldberg. However, in hindsight it might be helpful to go back a little bit further to understand our daughter’s story. During pregnancy, the integrated screening at about 3 months provided a scare when a high level of AFP was detected. Fortunately, further testing proved negative for spina bifida. Around month 7 or so Emily’s stomach just didn’t look big enough… to the doctors anyway! After an ultrasound, we were told the baby’s weight did not match her gestational age. They watched Olivia carefully and at 37 ½ weeks they decided it was go time.
At 4 pounds 6 ounces our beautiful Olivia was finally here! However, she struggled to keep her temperature and blood sugar levels up. She spent two weeks in the NICU, but came home in time for Thanksgiving Day, the Christmas holiday season, New Years, and Howard’s (shhh 30th) birthday. The ongoing joke was that she slept right through it all. Only now do we think perhaps she shouldn’t have slept so much.
While in the NICU Olivia failed the hearing test twice, and then two more times at the audiologist’s office. January 7th, 2010 started out great… she passed a more intensive hearing test with flying colors!
Later that day Emily took Olivia for her two month check up. She had not been eating very well, and had been spitting up more frequently. Her Pediatrician was surprised to see that she had gained 2 pounds at her one month check up, but only 8 ounces since. He thought perhaps she had acid reflux and prescribed Zantac. The next day, Emily noticed that Olivia was still not eating much at all and spitting it up at that. After talking with the Pediatrician, he too was concerned. He sent us to the hospital for an ultrasound of her stomach and lab work.
The ultrasound looked normal, so Olivia’s journey for answers began. They feared she had an inborn error of metabolism and used the term “failure to thrive.” She was then transported to UVA Children’s Hospital in Charlottesville where doctors and nurses worked diligently to stabilize her for two weeks. A feeding tube, blood work, blood transfusions, a central line, an IV, a skin biopsy, oxygen, ultrasounds, x-rays and about 20 doctors later and still no answers. She had low sodium, low potassium, fluid around her heart (that had to be removed) and extremely high levels of lactic acid in her blood. That’s the first diagnosis we heard…lactic acidosis.
After about one week of not being able to stabilize her the way they had hoped, her breathing worsened and they had to place her on a respirator. An MRI was ordered shortly thereafter, and we were told it was a “textbook image of a mitochondrial disease.”
January 25th was by far the worst day of our lives. Olivia started having seizures, and it only got worse from there. That night she went into cardiac arrest three times. The third and final time, they could not bring her back.
Olivia was the strongest, most beautiful little three-month-old angel. She had big blue eyes, and the softest skin. She loved to hold things in her tiny hands, and one day before passing, she was playing and staring at lights on toys. She smiled behind the tape holding her breathing tube in place. There are not too many people who would still smile after all that she went through.
After several months, a muscle tissue biopsy confirmed it was a mitochondrial disease. We were told the diagnosis was a Complex I Deficiency. As her parents, we will do whatever it takes to make sure Olivia is never forgotten. Our hope is that other parents do not have to go through what we did, and that other children do not have to endure what sweet little Olivia did.