Our story…Trevor’s story:
On November 5, 2008 Nicole gave birth to our 2 beautiful fraternal twin boys Tyler and Trevor. The boys were born 5 weeks early with Tyler weighing in at 5 lbs 5 ounces and Trevor weighing 5 lbs 10 ounces. Our friends and family could not have been more happy for Nicole and I considering the very long journey we had been through with respect to becoming pregnant, multiple miscarriages and finally successful fertility treatments. Nicole had a very difficult pregnancy involving “morning sickness” all day long, migraine headaches and 56 days of bedrest in the hospital (but who was counting). Finally, at 4:18 and 4:19 pm on November 5th (the day after the Presidential election) we became the parents of 2 healthy baby boys!
It was now time to go home and enjoy learning how to become the parents of twins. I took a leave of absence from work to help with the transition of caring for our 2 children.
At about 7 weeks we noticed that Trevor was spitting up a lot and that sometimes his milk would just pour out of his mouth if we laid him flat on his back. We inquired about this issue at our next appointment at the pediatrician. Our pediatrician diagnosed him as having infant acid reflux and she recommended changing his infant formula and prescribed a medication to shutdown the acid being produced by his stomach. She said acid reflux is very common among premature babies and that it will likely go away between 7-15 months of age as the muscle at the top of the stomach strengthened – no longer allowing the food and acid to come back up the esophagus.
Nicole and I continued caring for the boys, but over time Trevor’s acid reflux continued to be a problem. He had become more and more irritable during feedings. We again asked our pediatrician about the reflux at our next appointment as Trevor’s weight gain had slowed considerably. Tyler at this point was eating much more than Trevor and was starting to show signs of being more developmentally advanced than Trevor. Eventually, Tyler was able to hold his head up and roll over, where Trevor was unable to do either. At 5-6 months Trevor’s development had stalled while Tyler continued to thrive.
At the boy’s 6 month checkup, the pediatrician determined that this was more serious than acid reflux and referred us to a GI specialist and a neurologist (reflux can sometimes be triggered by the brain and nerves). After tinkering with his reflux medications and awaiting the appointment with the neurologist, it became extremely difficult to feed Trevor without him crying and becoming upset. At this point, Nicole and I knew there was something else wrong with our son. How could he be starving and not want to eat? At this point, we insisted on being referred to Rady’s Children’s Hospital in San Diego to quickly assess the underlying cause of the acid reflux.
When we arrived at Rady’s on May 26th, 2009 we were assigned a room and met with the coordinating pediatrician on staff. The doctor quickly consulted with the neurologist and GI doctors to come up with a plan. After many different blood tests, we agreed that Trevor needed to be put under to perform a detailed MRI, spinal tap, GI endoscopy (scope of GI tract) and Ear-Nose-Throat scope of the upper esophagus and trachea, larynx etc.
Trevor recovered from the procedures remarkably well and we awaited feedback from all the test data and procedural results. Two days later we met with a very well respected metabolic neurologist. During this meeting he informed us that although the basic MRI of the brain appeared normal, the spectrum MRI (detailed MRI of white blood cells in brain) revealed some abnormalities. He therefore wanted to perform a few more lab tests for some very rare genetic neurological disorders. At this point we became very frightened!
On June 10th 2009, our son Trevor was diagnosed with a very rare genetic neurological disease called Krabbe disease. Trevor’s fraternal twin brother Tyler who after undergoing testing was determined not to have the disease. Our neurologist informed us that Trevor would probably not live beyond 2 years of age and due to the devastating nature of the disease we should “seriously consider sedation and hospice” upon leaving Rady’s.
We had entered Rady’s thinking Trevor was simply failing to thrive, and two weeks later we left with a diagnosis of infantile Krabbe disease – a terminal illness. Our son was going to die and we were devastated with very little hope and no idea what to do next!
Luckily, we found Dr. Maria Escolar who is the leading Krabbe specialist in the USA. Meeting with her and her team gave us the opportunity to focus on Trevor’s health and learn all that we could about the disease and how to care for Trevor. We were also able to get some medical equipment through the Hunter’s Hope equipment & supplies program.
We are forever grateful to Dr. Escolar and her team at Children’s Hospital of Pittsburgh of UPMC for teaching us that Trevor can live and thrive despite having Krabbe disease. Trevor, is still fighting the fight…and we couldn’t be more proud of our living Angel!