Normally around this time Ella-Marie was just out of surgery in Utrecht. Yesterday evening, however, we received particularly bad news. In preparation for surgery, a final MRI was taken and held against the other images. This showed that Ella-Marie has an extremely rare (there are only a low number of study cases in the world) and recently discovered disease: MOGHE. This means that the dysplasia (abnormality) takes a progressive form and the right hemisphere will completely "break down."
The consequence was (and is) that a "minor" surgery, so planned
today, is unfortunately out of the question. Because of the
experience in Utrecht, we know that the effect against the epilepsy
would be nil. This has also been confirmed by Leuven.
It is also true that we now have our backs against the wall and are
faced with a very drastic choice: We have to have a hemispherectomy
performed. This involves separating the right hemisphere from the
rest of the brain.
Consequence? In the very largest operation, the entire
hemisphere of the brain will be disconnected. As a result,
Ella-Marie will no longer be able to use her left hemisphere of the
body properly. After much rehabilitation work, she will be able to
walk (with trailing motion) and will be able to move her left arm
with large movements. The fine motor skills will never work again.
If we do the major surgery, we must also take into account vision
loss in the left eye.
And just there there is still a little bit of hope. Possibly we can
safeguard a very small part in the back of the brain, so that
Ella-Marie's motor skills will be gone, but her sight will
remain.
To allow us to get used to the idea and already make various preparations (rehabilitation, psychologist, wheelchair, adjustments at home, work interruption, ...) the major surgery was not performed today, but has been postponed. Monday we will speak further with Utrecht and both Leuven and Utrecht will meet to discuss the situation and give a final verdict.
The surgery will be performed in Utrecht, but the full rehabilitation will run under the direction of Prof. Dr. Katrien Jansen in Leuven. We are thinking of UZ Leuven in combination with Pellenberg.
The picture you see is one we took on a wonderful trip to the
sea. We want to thank you all for the heartwarming and sincere
messages, cards, candles, .... . We know that the news has touched
you and we can only say that you should try to enjoy every day.
Hold your loved ones and tell them you love them too.
We are going to try to enjoy every day. There is a very heavy and
difficult period coming up, but we are going to do everything we
can to make sure that Ella-Marie comes out of it the best she can
and is surrounded with lots of love.