Viral Encephalitis Lived Experience- Betzabé’s Story

This is the story of my sister Betzabé, who was affected by viral encephalitis in 2017 when she was 45 years old. My sister lived in Caracas, Venezuela.

My sister used to be a very active and tenacious person, and mom of two kids: Marcello (who was only 3 years old at the time) and Juan Andrés (15 years old at the time). She was a dentist with a master’s degree in public health management.

In 2017 when my sister was diagnosed with encephalitis, Venezuela was amid dozens of protests. Hospitals were hopelessly short of supplies and doctors were leaving the country in droves to work abroad.

Given this situation, I had to travel from The Netherlands to Venezuela after April 2017 to bring my sister’s medication because the medicines she needed were out of stock.

How it all began

In March 2017, my sister had severe headaches, but she went to visit my mom. Unexpectedly, when she was visiting my mom, she started to lose her ability to speak and started to forget things, she could not remember small everyday facts. She was confused, disoriented, and was experiencing short-term memory loss.

My sister was taken to a neurologist. However, emergency services were unavailable due to the catastrophe in the Venezuelan Health System.

It was clear that her brain was not functioning properly. The precise diagnosis was inaccurate, she had hypersomnia and behavioural changes, an MRI scan was urgently required but in the small town, where my mom lives; it was not possible to get one done.

My brother-in-law took her to a private clinic 100 km away, where the MRI, spinal tap, and blood tests were done, and her diagnosis: viral encephalitis was made. She was then hospitalised, treated with acyclovir and several rounds of steroids.

After she was discharged from the hospital, she had a massive personality change. Talking became a problem for her and she became increasingly anxious. Writing, typing, and texting on her phone also became difficult for her too.

She underwent continued tests during that time, and while she was showing signs of improvement, her husband took her back to her home in Caracas. Upon returning home in August 2017, she began suffering from panic attacks. The situation became out of control, she started saying that she could hear voices and that she wanted to jump out of the window.

She was taken to a clinic in Caracas where several neurological tests were performed including another MRI. After this, she was hospitalised again and the neurological team mentioned that she may have had Zika virus, and it might have caused the encephalitis. My family decided to bring her back to my mom’s house in our hometown.

In April 2018, she was taken to another neurologist in Valencia, Venezuela, who managed to prescribe the appropriate medication in the right dose to cope with the anxiety. Eventually, she quit smoking.

After quitting smoking, we felt relieved and had a wave of optimism regarding her health. Her husband decided to take her home to Caracas to reassume the recovery plan but unfortunately, it did not work out as intended. She started laying on the floor instead of on the bed and started to have absence seizures and urinary incontinence.

Her recovery was –as my mom said- like a roller-coaster ride. It was very hard. Some days, she could show progress but other days her health would deteriorate, which made us feel very frustrated.

By that time, she was being seen by her neurologist in Caracas, who could identify a brain injury in the frontal lobe of Betzabé’s brain. To treat the absence seizures a medication was prescribed. Nevertheless, Betzabé’s rehabilitation program had to be postponed again until she was able to have therapy. Her husband drove her to my mom’s house, where she remained until her last breath. Betzabé became dependent on my mom.

By the end of 2018, Betzabé started with speech and cognitive therapies. Later, she was able to communicate better by formulating long sentences and answering our questions. She was aware of what happened to her, she became a good listener, and we would speak on the phone very often. She would put hands-free on and do some yoga exercises while I was talking to her.

Although we -as Betzabé’s family- knew that she was not able to live the life that she lived before the brain injury, we were still fighting very hard to help her to build a worthwhile new life within her capabilities. We hoped that she could recover at least and have the independence as a person to look after herself and her youngest son.

By mid-2019, Betzabé was stable but still not fully recovered. She continued with occupational and speech therapies. She used to react very slowly. Her anxiety seemed to be less although she was obsessed with eating carbs.

In the summer 2019, another MRI was performed, the doctor informed us that the injury in Betzabé’s frontal lobe was recovered but compared with previous MRI’s performed, the latest MRI showed an involutional change.

The last days of her life

In January 2020, I arrived in my hometown to visit my mom and my sister. My sister was seen by the neurologist, her psychiatrist, several blood tests and an electroencephalogram were done. Unfortunately, we were told that her brain damage was irreversible.

Although I could see that her health condition was not improving, I wanted to have unforgettable days with my family. Dealing with the situation was not easy at all, my mom’s health was also deteriorating, and she was losing hope. I felt devastated. It was time to let go and let God do the rest.

My sister ate slowly and could not remain seated when she was eating. She even had difficulties swallowing and sometimes she might drown but she was able to take the bite out of the month. She needed assistance to be able to have her daily routine.

I had the determination to give my sister a happy period during my stay. We shared time with family and friends and allowed us to spend time observing and feeling the simple joys that could go unnoticed each day. We went out with my mom to a nice restaurant, had a coffee with friends; went to a yoga class, and had a delicious piece of cake after the therapies. We just did simple things to celebrate life and enjoy each moment!

After 11 days of beautiful moments, I had to say goodbye to my loved ones. I arrived in The Netherlands on Monday 3^rd February and on Sunday 9^th February, Betzabé passed away at my mom’s house after having a respiratory failure while she was having dinner.

A few days later, with my heart in pieces, I arrived to comfort my mom, who had fought untiringly since April 2017 to save my sister’s life. I always will be grateful to the universe for the strength of my mom, which certainly has been a blessing for all my family. Her duty as a mother and as my sister’s caregiver was until the last breath of my sister.

Even though my sister could not make it, I would like to take this opportunity to persuade all family members of patients, who are still fighting against encephalitis, or any brain injury left to keep faith. God bless you all!