Bella was born February 5, 2017 – a normal pregnancy, C Section had been planned and scheduled, but Bella had her own plan with an emergency C-Section the week before. The delivery went normally except that the delivery nurse said Bella was not breathing well with no major concern. Bella’s nurse swaddled her and took her out of the room. When Mom was in recovery, the pediatrician disclosed that Bella was being flown to Louisville and he was unsure what was going on with her. In his explanation, he said she had an enlarged spleen and liver while covered in a “blueberry rash” or bruises. Her blood platelets were extremely low and she had been taken to the Neonatal Intensive Care Unit (NICU).
Bella’s mother did not see her again until the morning of Day 3 after some blood work. Two hours later, Bella was given the diagnosis of Cytomegalovirus (CMV), a virus caught during pregnancy. Her mother had not been sick except for a 24-hour bug – she had been without fever so the information left mom wondering when she could have caught something so detrimental to her unborn child. Bella showed signs of congenital CMV with enlarged and poorly functioning liver, purple skin splotches, abnormally small head, enlarged spleen and seizures. She had brain calcifications, so a “herd” of specialists began to roll in, one after another. The undoing of her parents’ patience was the “slices of her brain” pictures by the neurologist revealing her brain had extra folds causing more space between the brain and skull. The family was told Bella was at a high risk for seizures and developmental delay. It would affect her verbal ability to communicate so each milestone of her growth and development would be examined closely. She was given seizure medications as a precaution which led to gastric issues immediately. Finally, when Bella was 1 year old, the doctors began explaining in detail that she was not meeting any of her milestones. Mom told all medical personnel that she did not want them to ask, “what Bella was not meeting on that chart”, but instead, to focus on HER and what was happening in her daily life.
“Our home life totally changed as Bella was a complex needs girl”. Even teething was an issue as her immune system rejected the added pain so Bella often experienced hospital stays. Dad was able to take extra time off from work as needed, and Mom became the expert in her child’s care. In the NICU, a referral to First Steps had been made. The process took forever – it seemed like no one knew what CMV was. Mom became Bella’s case worker and drove the process. At 3 months of age, the parents were told that Bella could not hear. That was a rude awakening for all the family.
Because of a friend’s recommendation, a wonderful blessing entered their lives – an audiologist named Shelly Moates. Bella was pronounced Profoundly Deaf in both ears leaving the family in a stage of unbelief, as Bella had seemed to respond to sound. Shelly arranged for Bella to have a sedated hearing exam. This happened in a total of 7 days so with the right help, anything is possible. Shelly became a lifelong friend and resource for Bella. The validated diagnosis of Profound Deafness in both ears put her on the track for cochlear implants and hearing aids. A cochlear implant uses a sound processor that is worn behind the ear. A transmitter sends sound signals to a receiver and stimulator implanted under the skin, which simulates the auditory nerve with electrodes that have been threaded into the cochlea. After fighting insurance for several months, this one-year-old was ready to go. Cincinnati Children’s agreed to do the cochlear implants in both ears only if a panel of 6 (with various disciplines) agreed that was her only shot at hearing. After 8 hours of surgery, Bella’s life was about to change.
Ever hear of young children who would not keep their hearing aides on? Headbands were made to keep Bella’s hearing aids on, and she was passionate about wearing them! The family had to wait at bedtime until she was asleep to remove them. If one of the batteries was not working, Bella would let you know with her eye gaze (a stare). If that did not work, then the grunts would begin. Now, if absolutely no one was meeting her need, the wailing would start. She loved the stimulator (activated on her first birthday). The most loved memory is Bella on the way home – she was so fussy and when she heard music playing – she got very still and had the biggest smile.
During this period of time, Bella was bowing up and becoming rigid in her positioning. These muscle contractures led to diagnosis of Cerebral Palsy which is a congenital disorder affecting body movement and muscle coordination. Cerebral palsy is due to abnormal brain development, often before birth. Bella’s home was soon invaded by speech (SP), physical (PT), and occupational therapists (OT). It was hard finding the knowledge needed to support Bella, and service providers did not discuss Bella so one hand had no idea what the other was doing. Bella needed a specialized wheelchair, and it was believed that a stroller was what she needed. After many calls and applications to different programs, Bella was fitted for the chair that could best accommodate the positioning she required. The parents were told many times that they did not have a specialist to work with Bella. “Families need to know that they must become the strongest advocate for their child”, said Bella’s mom. “Don’t take no for an answer”!
Bella’s family, brothers and extended family were very involved with Bella. She was happiest when her brothers and sister were around – all six of them! In the beginning, all the siblings were somewhat scared of her because they had never been around a medically fragile child. As time went on, more and more equipment and machines were added. Bella’s care was so time consuming, the parents pondered on their lack of attention to the needs of all their children. There just never seemed to be enough hours in the day…
Bella was hospitalized at 2 years old because of her seizures. The physicians had hoped to control her seizure activity, but as she aged, they increased both in intensity and number. For 6 months out of her 2nd year of age, Bella was in and out of the hospital. “We didn’t realize she would get to this point so quickly”, said her mom. During one of those stays, they were visited by an Epilepsy Neurologist. According to Norton Neuroscience Institute, epilepsy is a neurological disorder in which abnormal brain activity causes repeated seizures which significantly impact the quality of life. At this level, Bella required specialists to collaborate and develop a multidisciplinary approach to her individualized care. When seizures are not controlled by medication, it is called Refractory Epilepsy, so a comprehensive treatment program was developed for Bella. A g-tube was inserted to give the medicine – the goal now was to get the meds and food into Bella for sustenance. Bella thrived with the g-tube.
A Vegus Nerve Stimulation (VNS)port to the vagus nerve was placed in hopes of controlling the seizures. The vagus nerve carries an extensive range of signals from the digestive system and organs to the brain and vice versa. It is the 10th cranial nerve, extending from its origin in the brainstem through the neck and the thorax down to the abdomen. By stimulating the vagus nerve, a message could be sent to Bella’s body that it’s time to relax and de-stress, which would have led to long-term improvements. However, Bella did not see any significant improvements. Bella was not a candidate for brain surgery, because of the shape of her brain and the nature of her seizure activity. After that 6 months, there would be no more surgeries or challenging medications. The family was on the last leg of Bella’s life journey.
God gave a miraculous gift to Bella and her family that summer. Bella loved to be outdoors and going camping. There were many nights spent under the stars and beside the lake. She went to Disney with all her family including both sets of grandparents. Bella got to see the ocean! Because of the seizures, long trips were hard and the grandparents were such a help. They took Bella’s brothers and sister home with them, and the parents were able to take extra time on the way home with a stop over at the Gulf Coast. Bella had a monumental sense of smell, so with the Red Tide coming in, the family made a quick get-a-way from the Gulf Coast.
Joy filled the hours with Bella for her family. Bella not only loved the water, but she also insisted on being in it! If looks could kill, many would have gone by the wayside trying to get her out of the tub, pool, or ocean. “How dare you!”, thinks Bella. By her expressions, you would know that to float suspended in water was the best feeling in the whole world.
Make a Wish Foundation wanted to send Bella to Florida again, but she was too sick to fly in a plane. So, they sent the entire family to Gatlinburg. Bella experienced the Waterpark, the Hatfield’s and McCoy’s Musical, Dolly Parton’s Dixie Stampede, and the Aquarium. Since it was Christmas time, Bella was mesmerized by all the lights. Dollywood gave the entire family one day at the park with all their lights, and Bella’s favorite of all time was the Musical Christmas Tree. What a magical experience for Bella and her family.
The Kentucky DeafBlind Project (KDBP) entered Bella’s journey just before her 2nd birthday. Kim, the Family Engagement Specialist, called Mom as she was driving to Louisville between appointments and visited the family at home before COVID-19 restrictions. The project linked Bella with a vision therapist before she turned two. Donna, Kim, and Peggy with KDBP helped register Bella for preschool the spring before she died in April and provided the family with other helpful recommendations. If only the family could have known about the Kentucky DeafBlind Project earlier, it could have made a difference in the struggle of finding resources specific to deaf blindness.
Bella loved any vibrating toy with Tickle Me Elmo being one of her all-time favorite toys. Pocoyo was her favorite cartoon, and where Bella was, so was Pocoyo – it played constantly. Bella was a great teaser. She loved to give “slobbery kisses” and she was very picky about who she kissed. She would lay in Dad’s arms and kiss him as Mom says, “don’t you give him my kisses”! Bella was her own little person – looking at mom with mischief in her eyes and of course, giving those kisses away to dad. Bella went out of this world the same way she came in – on her own terms.What can be said to other families who have a Bella in their life? “Community is the key. It will always be difficult, and some friends will not know what to say so they stay away. But the ones who walk beside you help you get through it” shared Bella’s mom. Family, service providers, caring medical personnel and other special needs parents can make all the difference to a family in crisis. “These parents become your best friends”, stated mom. “There is a scenario of a parent falling in a hole. The school sent down a bucket (resources), a doctor sent down medications, and a family throws a rope down for you to climb out. But – a special needs parent goes down the rope into the hole with you and both of you climb out together”.
After Bella died, Mom has been determined to spread information about CMV, connecting with many families and telling their stories of this unusual condition that plagues children. Her journey has led to connection with many professionals, parents, and others who want to see change happen. “Bella’s Bill” is currently in legislative development and will champion CMV Awareness. The bill includes Universal Screening for CMV at birth and education for expectant parents about CMV.
For more information about Bella’s Bill, go to:
● website for Bella’s Bill: https://www.bellasbill4cmv.com/
● KY CMV Family Stories: https://www.bellasbill4cmv.com/parent-stories
● Senate Bill 91 – Bella’s Bill: https://apps.legislature.ky.gov/record/21rs/sb91.html
For more information about the Make a Wish Foundation go to: http://www.wish.org
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