To conquer the pain, to conquer a death

Every minute is filled with a fear that the child will die – a life of a parent shouldn’t belike this! The worst however is not fear, but helplessness. When you look at your child’s suffering for which there is no cure, sometimes you want to cry, shout, just to do something… And when a slight chance will eventually appear that you can actually win with the illness, there is nothing left but to beg for help. Today Hubert’s parents are asking for help, for boy who could live a different life after years of suffering.

 

It happens at night. The darkness does not bring relief, but it brings fear. Fear for the child’s life…Hubert’s mum and dad have not slept properly for years, but they have stayed awake by their son’s bed side. They hold their phones in their hands tightly ready to quickly call for help. Every tens of minutes Hubert is losing breath and consciousness, his body goes into spasms, his eyes are opening widely – there is only void, fear and emptiness.  His parents swallow their tears and nervously count the time passing as when the fit lasts five minutes they know they need to give the boy his medication immediately – Hubert is taking his dose three times bigger than an adult person.

 

If the fit is longer, then the parents need to call the emergency services as after 20 minutes the child would die.

 

 

When the morning comes and the sunlight fills the house through the blinds, one nightmare ends and another one begins. The night is filled with fear and the day – with despair. When Hubert wakes up, he is a totally different boy, paying the consequences for fighting for his life at night. Every fit is taking something from him. It is like pressing a RESET button on a computer – a device becomes inactive for a moment, useless. Then it starts working again, but all previously saved data disappears. In exactly the same way epilepsy ‘switches off’ the boy’s brain. During one night it happens like that a few times.  One day Hubert can count, read and turn pages of a book cheerfully… and then the night comes. When he wakes up, he is unable to subtract, add, he cannot remember the numbers. Letters known in the past, that he could build beautiful sentences with, now are just black spots. Instead of reading aloud, Hubert cries, because he doesn’t understand what happened.  Epilepsy erases every day everything from his memory leaving a clear sheet.

 

Hubert was born 8 years ago. Today he should run with a rucksack on his back and sit at his school desk. Instead he swallows his tears, learning every day what his illness takes away from him anyway. When he was born, his parents didn’t know that he will spend his future between hospital walls, that it will be filled with helplessness, desperation and agony. Happiness from the birth of a child so strong that makes you feel euphoric lasted only 3 days. On the 3rd day the doctor called to see the parents to talk about the results of the USG scan.

 

Cerebral haemorrhage – few dozen letters in hospital records caused mum to experience such  fear that made her feel paralysed and numb. I know that cerebral haemorrhage is a life threatening condition; it often means paresis, paralysis – she thought. The doctor kept reassuring her that these types of haemorrhages in newborns are nothing to worry about, that everything should be fine. Mum was listening, but she already knew then that it is not going to be ok. She also knew something else – only then when she became a parent, she learnt what it means to be scared.

 

 

The doctor asked us to come to undergo an USG scan in 6 weeks time, but we weren’t going to wait. The word ‘’stroke’ frightened us – says. We took Hubert to a specialist to assess his condition. When she saw him, she felt helpless.

It turned out that even premature babies do not have such neurological abnormalities like our Hubert. Since then we were busy attending further tests, appointments with neurosurgeon, with physiotherapist, with exercises at home, consultations… There was no room for despair, we had to act fast. The doctors praised how well Hubert was developing. We heard that if we carry on like this everything should be fine. We calmed down thinking that the worst is behind us, we were so wrong…

 

It all started when Hubert was only 3 months old. Shops were decorated in Xmas theme, Xmas songs were played everywhere, outside the shopping centres people could buy Xmas trees. They stopped at a petrol station. It was evening and it was snowing. Dad was putting in some petrol, mum was breastfeeding Hubert. She will never forget what happened – her little son suddenly took his lips off her breast and yelled like he was in enormous pain. It wasn’t a cry or a moan; it was a horrible inhuman yell. She heard a similar sound only on TV – when someone was killed and was dying in agony…Hubert became silent but she could still hear an echo of his yell in her ears. A fear when she felt after her baby was born came back with a double impact.

 

The next day, she was at work, when the phone rang. Her husband called who stayed at home with their son. Hubert has been playing with me all day, when I turn to him, his eyes roll away- he said. Then they thought that it was just an innocent game. In his bedroom with colourful walls, full of soft and rattle toys, where Hubert is babbling, there is no room for thoughts about illness and death.

 

Today those thoughts don’t leave them even for a second.

 

 

They remember what happened at this time.  Hubert’s eyes fleeing into the skull. From his mouth smile disappears ... Parents call Emergency. Running with the child through the hospital corridor. Series of medical examination – What is wrong with Hubert ? Did he catach any bacteria? Did something happen during pregnancy, during labor? Hubert’s body twists and shiver. His hife start faded away.. 

 

Epilepsy was only the Word for them. which they knew  from the book and Film. Now they know everything about this diseases. They know that to neurological disease manifested by attacks of lightning inside neurons. Epilepsy caused damage brain. Convulsions occur, the patient loses consciousness. Hubert’s  attacks happen every day. Then, when he first came to do the hospital, there were 6 per day. The boy stopped doing anything. His body was losing with a defective mind. When started ONLY attack, we were afraid of one –Hubert may die – Said mother of the boy, with breaking voice.

 

They spent in hospital 90 days, 540 epileptic seizures.. Then a miracle happened - Another of the applied drugs brought improvement. The attacks stopped from day to day. They returned Home. 3 years - took enough normality, 3 years of looking how is Hubert developing,wal king, Reading, singing.  Three years calm nights, 3 years sleep disorders, Which cruelly let them think they disappeared forever.

 

 

Suddenly came the memorable evening, when was dark outside. At Home was silence. Hubert was sleeping when his  mother entered to the Hubert’s room.  Instead of peacefully sleeping child she saw taut body, with open month.  It looked like a agony. She was convinced that this time the end that her child really dies. Fear - like a shadow of death - filled back room for children. When after 20 minutes the ambulance came, the worst is over. Hubert was calm, his eyes was closed.  We knew that i attack of epilepsy and Neurologist  confirm our concern. Our response ... the lack of Word. We cracked. We were confident of Victory,  but we lost a battle.

 

Do you know what it's like to look at child when is daying?  Hubert’s parent  know.  For several seconds duration epileptic seizure their son looks like a dead body - Hubert freezes, stops breathing. The situation repeats  every day, from four years. Every day they are afraid that the ambulance did not have time to get on time. Four years of life in fear and looking how them  child going backwards because of the disease. Today, Hubert gets a horse dose of drugs but this did not not eliminate attacks, but only to reduce their frequency and violence. Epilepsy become resistant to their action.

 

Address Schön Klinik, specializing in the surgical treatment of epilepsy, gave them Polish doctors. There perform a detailed diagnosis of brain, allowing for precise detection of epileptic focus, Responsible for the formation of seizures. If LOCATION allows it carried out the operation. Children of the attacks, for which there is no drug activity, which did not go, do not speak, returning from Schön altered. The operation frees them from hell attacks and opens the door to a normal life.

 

EEG, which will Subjected Hubert, is expected to last seven days. For this time boys brain will be continuously monitored, and he will be under the day care physicians. It is, however, expensive study - almost 40 thousand euros! And later still operation ... The amount that may seem large, but it is small, when one thinks of the rate - that is the life of Hubert, free of attacks and the life of his parents, free from fear. Without surgery the boy threatens what other children with epilepsy - neonatal withdrawal to the stage where you do not go, do not speak, functioning only as orders physiology. Do not let it. Hubert and his parents screaming for help today ... Hear their voices.