Bubby

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When Brandi and Thomas found out they were expecting their first child Bubby eight years ago they were ecstatic. Brandi did everything she could to ensure a healthy pregnancy:  taking vitamins, cutting down on caffeine, getting enough exercise, and rest. But at about 12 weeks, Brandi developed what she thought at the time was a bad case of the flu and recovered within a week. Unbeknown to the expectant couple, this may have marked the time when the life of her unborn child would be set on a course beyond their control. At some point Brandi had contracted Cytomegalovirus (CMV), a common virus that approximately 50% to 80% of adults in America have by the time they are 40 years of age. Congenital CMV infection (cCMV) is caused when the infection gets passed on from the mother to the fetus via the placenta.

During antenatal care in her second trimester, signs started to emerge that there may be a problem with the baby’s development. The couple bounced back and forth between doctors and universities to try to better understand what was happening.  After an ultrasound, they discovered ascites (fluid build-up in the space between the lining of the abdomen and abdominal organs) and was given medication to help reduce and clear the ascites.  They also ran a TORCH test which tests for toxoplasmosis, other infections, rubella, cytomegalovirus (CMV), and herpes simplex virus (HSV). The results had shown that everything was in normal range. The journey continued to be bumpy with continued concern for the unborn child, but still no clarity as to what was causing the ascites to continue growing. At 39 weeks, the day the couple had been waiting for had finally arrived! They would meet their precious boy soon! The next 36 hours of labor would prove to be very long and difficult.  But with perseverance, Bubby was born. Within the first hours of Bubby’s life there were already signs that all was not well. Bubby had failed his newborn hearing test and he also received light therapy for jaundice.  Over the next four months of Bubby’s life, his mother started to notice other signs for concern such as tremors, not holding his head up, not sleeping, and his head did not seem to be growing in proportion to his body. These concerns were always dismissed by the pediatrician. It was only after consulting with a different doctor that Bubby’s seizures and small head size was detected. He was sent to the Seattle Children’s Hospital for a CT scan, which showed that Bubby had such severe brain damage that they were afraid that he would not be able to walk, talk or be potty trained.  Bubby was severely delayed, he did not sit till he was 12 months, crawl till he was 18 months and didn’t walk alone unaided till he was 3. At 10 months it was found that he was deaf. But it was only when he was 2 years old that the cause of all Bubby’s difficulties was discovered.

According to the Congenital CMV Foundation, CMV is the most common cause of cerebral palsy and the leading cause of non-hereditary deafness in children. Other possible outcomes  a baby born with c CMV include death, intellectual disability, seizures, blindness, brain damage, autism, growth problems and more. This is the reality that Bubby’s parents were faced with when learning of Bubby’s diagnosis and while they were relieved to finally have closure to the mystery surrounding his developmental difficulties, Brandi and Thomas were devastated. Torn between the guilt and fear, there were a lot of sleepless nights worrying about the future of their child. There is no specific treatment for cCMV and the virus remains with the person for life. Treatments such as physical therapy, occupational therapy are needed.

Bubby’s diagnosis of cCMV has brought with it a diagnosis of cerebral palsy (CP), Attention Deficit and Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), Obsessive Compulsive Disorder (OCD), microcephaly (small head), and epilepsy. The epilepsy is characterized by 4 different types of seizures that need to be controlled by medication. If he has a busy day, if he gets too hot, or sick he will have one or ten. Bubby also has autism with huge sensory issues that has become a daily struggle, including food and oral aversions. Bubby doesn’t eat and is primarily liquid fed (except for his favorite, Cheetos!). A gastronomy tube (G-tube) has been inserted through the abdomen to deliver nutrition directly to Bubby’s stomach to ensure he gets the fluid and nutrients he needs to grow. He has had a T&A (tonsillectomy with adenoidectomy) and Cochlear surgery for implants which has helped tremendously with his hearing.

Bubby is now eight years old and has recently started an amazing program for autistic children, he is painting, hitting minimally, and comes home in a great happy mood a lot of the time. Bubby has a loving personality, a wonderful imagination as well as a stubborn side.  He adores puzzles, Doctor Who (his favorite doctor is Matt Smith), Transformers, Marvel (Marvel Legos) and Teen Titans.  His parents and Bubby often go to Comic Con in Seattle where they get to meet some of their favorite actors.  Bubby has such a bright personality that he makes wonderful friends with both the fans and the actors every time they go. His mother says that all the challenges are worth it just to see Bubby smile. “I have had someone ask, ‘If you could change him would you?’ I tell them no… Because Bubby would not BE Bubby if he were any different. He is my baby and our miracle, and I and grateful every day that I get to be his mommy.”

 

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