Janine Ophorst
About four and a half years ago, we met Janine Ophorst. She is an expert in project-managing brain surgery and guiding parents and child. Janine will do everything she can to make sure everyone is moving toward the surgery in the best possible way. It is also thanks to her that we got a better idea about the whole story surrounding a hemispherectomy and thanks to her that we never gave up.
As also indicated in a previous blog, she is also very correct in explaining the less fun things that come our way, such as how it will feel to wake up after such an operation. And specifically for that, she, together with Prof Van Eijsden, also had a good idea: get in touch with parents who also have a child who had to undergo this surgery. And Thursday, January 26 at 9 p.m. was the day: a conversation with experts by experience.
Hugo and Marjan
I would like to introduce you to Hugo and Marjan. Two athletic
parents of 3 beautiful children. Also parents who, we learned
throughout the conversation, had traveled a very parallel path.
8 years ago, their third child, Guus, came into the world. After
Guus' first year of life, the first epileptic seizures began. About
7 years went from the well-known "it must have been a febrile
seizure" to the "let's try something else as an alternative" to the
final "we need very drastic intervention." And with every word they
said during the conversation, we got a clear picture on the one
hand and yet some hope and courage on the other.
Waking up badly
Guus had surgery on Nov. 18. One of his first sentences was "dad, the left side really doesn't work anymore does it?". The drooping face and constant fatigue right after the surgery also weighed heavily. In addition, Guus also suffered from phantom epileptic seizures. As a parent you then think that everything has been for nothing and your world completely collapses.
Neighbor
One of the best descriptions of experiencing epilepsy and performing surgery is the following: Guus (and therefore Ella-Marie) is sitting in the garden. In that garden the neighbor is walking through his garden with a loud lawnmower all day long. The result is that you don't hear, notice or feel everything and concentration is less.
After the operation, that neighbor is gone and you no longer have that annoying noise. "Good!", I can already hear you thinking. And that is true, but remember that Ella-Marie and Guus have never experienced the rustling of leaves, the whistling of birds or even the sound of silence.
So after the operation, there is not only a motor problem, but also in the head the child has to get used to all kinds of new stimuli. Thus, in the beginning we will have to approach Ella-Marie very calmly and gently. This then applies to both physical contact and talking, but also not accepting multiple people in the room or having a problem with the many doctors in the room.
Time
If one thing stood out about the conversation, it was how
"relieved" the parents sounded. They went through hell. They
thought they were already at their lowest point and then sank a
little deeper. But after a few weeks, things got better.
By giving everything "time," things got better (literally) step by
step. Guus didn't wake up paralyzed, but he woke up physically
limited. And that's how we should see it. March 10 will be the
lowest point: motor skills gone, all kinds of new stimuli, visual
field half lost ... . But hopefully as soon as possible
medication-free, seizure-free and ready to rehab.
How is he now?
Guus is still in rehab. At the physio he is successfully
learning some steps again. At the ergo he is learning to deal with
his paralyzed arm, as he has "lost" it. His language has improved
tremendously.
Hugo and Marjan will always put him to bed in the rehabilitation
center at night and on weekends he is allowed to go home. Actually,
it is "good" that he is still in the center, because that means he
can and will still make steps forward.
As soon as there is stagnation, he will be allowed to go home permanently.
Goal
As parents, our goal will be to be able to speak to other parents even 2 months after the surgery. Because Hugo and Marjan gave us a very clear and honest picture of the whole process. In their own calm way they discussed their journey. And with that they gave us, above all, courage to get started. Starting to make a 2nd birthday day for Ella-Marie. Because after February 8, 2012, March 10, 2023 will mean a new birth for our sweet girl.
Hugo and Marjan: THANK YOU!