Anna (story told by mom), Finland

In June, 2004, Anna (6 years) dreamed of becoming a dancer or a famous rock-star. In July, Anna had her first seizure, stopped breathing and was taken into the children’s ICU in Turku University Hospital. From that day a long journey started, of which destination is still unknown.

It took two months in ICU and four months in Children’s Neurological Unit before Anna was able to come home again. At first they suspected she only had strong fever spasm, but as the convulsing didn’t stop with any medication, they had to put Anna on a respirator and drive her brain activity down to zero. After a couple of days the doctors tried to carefully increase Anna’s brain activity. Anna started to convulse yet again and they then had to drive the activity down. We, her parents, camped next to her bed and prayed.

At first it seemed as if no one was hearing our desperate prayers as Anna wasted away slowly in her bed. Children came and left from the ICU. I counted the various nurses and doctors who came to see Anna daily, the children that went home and the children who died. I tried to cling onto the smallest promises of hope and my ears were tuned to listen to the talking around her. I tried to learn to read between the lines and understand the diagnosis; it all sounded gibberish to me. Finally the best analysis they came up with was severe encephalitis, but no one knew where Anna had got it from or whether she would survive alive. We prepared for the worst. Anna had now been on the respirator for nearly two months. It was time to make decisions.

The doctors started to slowly decrease Anna’s medication and let her brain activity increase. We stared at the EEG’s electroencephalogram and waited for it to come alive. Minutes turned into hours and suddenly the steady line in the monitor changed into a curve. We held our breath and waited for the curve to go wild, but that didn’t happen; the line stayed steady. Someone was finally home in heaven and had heard us. We, the parents, were not the only ones who cried that day and I bet the cheering of Anna’s doctors and nurses could be heard all over the hospital.

In a couple of days Anna was detached from the machines and her rehabilitation could start. Anna had to learn everything from the beginning. During the next four months she learned slowly how to move and speak again. At first she didn’t recognize the people around her, not even us, but we decorated her room at the hospital with photos, drawings and yellow post-it notes full of names. We played her favorite music and told stories about her life. Anna tried to remember and keep smiling but everything felt so strange and new.

Her terrible situation, with huge amounts of daily seizures, put on the brakes for her recovery at times and everything was just so difficult. We were told that it might take months to learn even the smallest, basic things and we would be lucky if we could get even a small part of the ‘old Anna’ back. However, Anna had always been a fighter and with baby steps she fought her way back to the living, impressing us all with her fast recovery.

In December, 2004, Anna made it permanently home.

During these ten years there’s been a lot of joy and crying. Anna has been treated with sixteen different epilepsy medications but nothing seems to get her seizures under control. Two years ago Anna’s epilepsy finally got a real name, FIRES (Febrile infection-related epilepsy syndrome), i.e. Lennox-Gastaut type epilepsy, which is very rare and extremely problematic to treat.

Anna has nearly every known form of epilepsy, including the latest, so called paralysis seizure, where Anna can understand and hear everything happening around her, but she can’t move or speak. These paralysis seizures can last hours. Anna needs to be medicated immediately when the seizure hits her, as the seizure needs to be stopped as soon as possible, so it cannot spread all over her brain and cause more damage than any other seizure normally does. Anna has to use a wheelchair part-time as she has too many fault poses in her body and her muscle durability is too weak for her to stand or walk for long periods. The on-going seizure situation has left severe damage in Anna’s brain and she has been noted as a ‘middle state mentally disabled.’ She also has neurological problems with using her sight. In Spring, 2012, Anna got a Vagus-stimulator. It was supposed to decrease and reduce her seizures, but that didn’t happen. Vice versa. The stimulator was permanently shut down in late 2013.

Anna will never heal. She will need a personal assistant 24/7 for the rest of her life. She sleeps with an oxygen saturation machine, which catches the biggest seizures. Nothing will catch the smallest ones, the ones that are too quick for the machine and the only way of knowing they have hit her, is the ‘goofy’ look on her face and her inability to move or speak when she wakes up; she is still a regular guest at the Children’s ICU.

However, Anna is a sunny, exuberant (nearly seventeen years of age) young woman, with a bubbling laughter and a curious mind. She has just finished her schooling and will start working at a Kindergarten and Kitty Care within a couple of weeks. She dreams about having a home of her own one day which could very likely happen, as she will be interviewed to be the resident of a new assisted living building this autumn.

Sure, nobody can tell what the future brings to her, but we take what we get and enjoy every moment we have, as having her in our lives is truly a blessing.

- July 25th, 2014

Contact info: jennifer.loiske@hotmail.fi