In 2018, we drove to Utrecht for a first time. Unfortunately,
we did not get good news then. The UMC (University Medical
Hospital) of Utrecht interviewed us afterwards and wrote an
article.
For this blog, it is also appropriate to post it again here in
full.
Belgian Ella-Marie had her first epileptic seizure when she was three years old. It was the beginning of a long medical journey of discovery. That journey has now ended in the Netherlands. Ella-Marie's parents are very happy with this choice. And with the good and above all human care in the Wilhelmina Children's Hospital. Now the biggest decision of all awaits them. For the happiness of their daughter.
Ella-Marie was born six weeks premature. Small and skinny as she was, she turned out to be a fighter and was soon able to go home with her parents. There everything went very well. Until she was three years old. One gray morning at six o'clock, her parents heard a strange noise. At her bedside they saw that their little daughter was having an epileptic fit. Father Pieter: "At work I had taken a first aid course, so I recognized the image immediately. In the hospital in Lier, Belgium, they said that such a seizure can happen to a small child, but that it is not necessarily problematic. The EEG didn't show much either. After two nights in the hospital, we were able to go home again."
Three seizures a day
Ella-Marie was given antiepileptic drugs. That didn't help. The seizures became more frequent and more severe. Pieter: "Then we opted for the university hospital in Leuven. An in-depth MRI showed scar tissue on the right side of her brain. By now Ella-Marie was having as many as five seizures every night, and three severe ones regularly during the day. Her brain was constantly taking a hit; the child suffered."
Normal life
"We feel that sister Olivia should not be the dupe of Ella-Marie and vice versa. Our daughters should both live as happy and normal a life as possible. That is what we strive for," says their mother Annelies. Pieter: "We see Ella-Marie as the happiest girl possible, who unfortunately has epilepsy. We just let them go to school, but my wife works part-time to pick them up and bring them. When I am abroad for my work as an IT manager, Opi and Omi stay at our house to help. The uncertainty about when the attack is going to come is very tough. But we are used to it. Anything for our daughter's happiness."
Emergency plan at school
Of the 2,000 seizures Ella-Marie has already had, about 10 were at school. All her teachers are aware. Pieter: "At school I gave a presentation on how they should deal with epilepsy. There had not been a single student with epilepsy at school until then. The teaching team made an emergency plan on how to act in case of a seizure. This is now going very well. The first time they still called the ambulance. Now they put her on a cot and give her emergency medication if needed."
What else can we do?
A spect was done in Leuven. That examination left Ella-Marie in the hospital for five days for all kinds of tests and measurements. Pieter: "The scar tissue they couldn't get rid of. The doctor said: we have to keep trying to counteract the seizures with anti-epileptic drugs. We noticed in our daughter that that was no longer possible." Annelies: "What else can we do, I asked the doctor. He told me that in Leuven they had not yet mastered grid research especially for children. They recommended a hospital in the Netherlands, where that knowledge is there. That's how we first heard of UMC Utrecht."
To the Netherlands
Annelies: "As parents, we look at the child and not the epilepsy. You can fight the epilepsy, but then you no longer have a child. We saw that so clearly with the medication. Ella-Marie was much less happy, didn't laugh anymore, was very tired all the time. We wanted to have the grid surgery done in Utrecht, because something had to be done. Her life was no longer bearable like this." Pieter: "Then we started calling the UMC Utrecht. I am Belgian and can say, it is very difficult to have an examination or treatment done abroad. You have to deal with a huge pile of paperwork. Utrecht is only two hours away and then you're already there, but the bureaucracy to get there is huge.
Pile of paperwork
It came down to the fact that the Belgian health insurance fund wanted to see proof that the grid operation could not be done in Belgium. And from Utrecht we were told that we had to get approval from the health insurance fund. So they wanted to hear precisely from Belgium." A stalemate. "Then we made a drastic choice," adds Annelies. "We decided that we would pay for all the preliminary examinations in Utrecht ourselves. That got the ball rolling and we were able to continue. We paid the invoices ourselves. Thank God we had that money, also thanks to my parents and parents-in-law. But of course it is very unfortunate that people without those financial resources cannot do that." In the end, approval from the health insurance fund did come. Hopefully the family will still get some of the money back. "I found the bureaucracy as tough as getting up six times a night for our daughter's seizure," says Pieter.
An angel
"In Utrecht, Professor Braun examined Ella-Marie and listened carefully to us. And then there was one angel: nursing specialist Janine Ophorst. If we hadn't had her, we would have given up. Because it was so difficult to find our way to surgery. First in Leuven, then contact with Utrecht, the health insurance fund. Janine knew perfectly who what where and when. You need that! And she helped us, so we could participate in scientific research. That way we could also contribute to the improvement of care. Because you don't wish a child with epilepsy on anyone."
Human
"And then the human. In Utrecht everyone looks at the patient and the life around him or her. Everything is set up to make that as pleasant as possible. We are insured for a single room, but when we came to the ward with Ella-Marie, she didn't get one. In Belgium, we would say: can you afford a single room? Then she gets it. In Utrecht, they said: is a single room good for Ella-Marie or would she rather have others around her? They also really took the school vacations into account when scheduling the surgery. We really appreciated that. After a year of talking in Utrecht, then came grid surgery."
Good doctor
"There was also good contact with Dr. Leijten. Friendly and alert, a very good doctor. We had complete confidence in him. So important. He did the surgery very well, we are very grateful! At 8 am Ella-Marie went into the ok and at 1 pm he called us already. Everything had gone smoothly, she was in pediatric recovery. We didn't see her again until intensive care. There too, the nurses were so positive and friendly. Everything was in function of both patient and parents." After surgery, testing began. Ella-Marie suffered no seizures. However, a constant epileptic activity in her brain was measured, some times it shot through. They also found the source of the epilepsy. Pieter: "Professor Leijten said: I won't make a statement until the last day. Good to know something like that, because it takes a week."
We don't give up
The news was bad. The epilepsy was in her motor center. Surgery would mean Ella-Marie would be left-sided paralyzed for the rest of her life. Pieter: "My wife was determined: we are not giving up. It was a difficult night. Then Dr. Van Eijsden suddenly arrived with the vagus nerve stimulation device. What a humane and correct conversation we had with him then. He told us very honestly that nervus vagus is not a panacea. One in three patients is helped with it and in them there is a 50% chance of fewer seizures. But he was impressed by our strength and wanted to try it. For us, this was the bright spot we needed. In the same surgery, the grid was taken out and the vagus nerve was implanted."
Sisters
By now Ella-Marie was getting a little scared of the doctors; she was having a hard time. In ward the Pelican she got nice child food. And she was allowed visitors for the first time again. Her little sister. That moment was such a huge boost for Ella-Marie. Three days later she was allowed to go home. Those sisters are two hands in one. At home afterwards we were called by Janine. About what still needed to be done, how Ella-Marie was doing now. Unfortunately, with the anti-epileptics and the vagus nerve included, Ella-Marie still has one seizure a day and sometimes doesn't feel well. Also, because of the medication combined with the seizures, she is not cognitively strong enough for normal school.
Choosing for your child
Pieter: "As parents we are in two minds. How long do we try to keep this up? Or do we choose seizure-free but paralyzed for life? We see that it is getting harder, at school and motorically she is deteriorating. So still the surgery? That means very tough rehabilitation period that is then ahead." Annelies adds: "With the vagus nerve, we hope to gain time. When Ella-Marie will soon be seven, we will be able to talk to her a little better and she herself may be able to see the impact a little better." Pieter: "But right now we still have vacation time. And the best part: we have our happy girl back. She jumps and dances, plays with her sister and friends. We now have to start making a choice for her happiness. Nothing is more important than a child's smile."
[boxed pathology]
What is epilepsy?
Epilepsy is a condition in which seizures occur. These seizures
occur due to a sudden, temporary disruption of electrical stimulus
transmission in the brain. There are several ways to treat
epilepsy, such as medication, a special diet or epilepsy surgery.
The UMC Utrecht Brain Center has the most experience in the
Netherlands with epilepsy surgery. We have been performing these
operations since 1973. Meanwhile, we have performed more than 1300
epilepsy operations on children and adults.
Lees meer over epilepsiechirurgie
[quote]
"We see Ella-Marie as the happiest girl possible, who unfortunately has epilepsy."
[quote]
"Nothing is more important than a child's smile. We must now begin to make a choice for her happiness."