Sturge Weber Reality: Measuring the Eye Pressure

Since Mathilda was born we grew quite familiar with hospitals and doctors. Every four months we have to check the eye pressure. For this we go to the Reine Fabiola Hospital for Children here in Brussels-Jette. It’s always a daytrip because it involves travelling to the other side of the city, waiting, experiencing belgian bureaucray (which includes more watiting) and a screaming Mathilda. The examination is on the open eye and with Mathilda getting older it is no longer possible to persuade her holding her head still so that a doctor can look into her eyes.

So this time it was extra hard. Today it took three adults ( us and one doctor) to hold her lying still on her back on a bench and an expert to measure the eye pressure with a Frankensteinish instrument. She screamed like hell. And I cried to. This is the last time we do it this way. It’s not good for Mathilda nor for us at a parent. Luckily the results were negative.

Afterwards we treated ourselves with a waffles at the hospital bistro. Needless to say it consisted of 1000% sugar. But Mathilda liked it. The orange colour is from her eye drops.

:: Hi, my name is Mathilda and I have Sturge Weber

I think it’s the easiest to start with the facts. A few weeks ago we got the long awaited results from Mathilda’s IRM. It confirmed that Mathilda has Sturge Weber. Unfortunately the doctors answers weren’t satisfied at all and there are still a lot of questions. I immediately contacted the Sturge Weber Foundation in the States and they were very helpful in providing support and information. Luckily there is an excellent experienced specialist here in Brussels’ St Luc Hospital, she is dealing with vascular abnormalities for about 20 years now. So for the first time within more than a year we found ourselves in good hands.

Just some facts about Sturge Weber: It is characterized by a congenital facial birthmark and neurological abnormalities. A red facial birthmark covers Mathilda’s right upper head. These angiomas – portwine birthmark, think Gorbatschov – create abnormal conditions for brain function in the region which means  there is a risk of seizures and convulsions. Fortunately Mathilda hasn’t had any seizures so far. Which is a good sign. Statisticly spoken. But I don’t believe in statistic anymore. They say that 1 : 30 000 is the rate to get Sturge Weber (it’s non familiar). Bingo!

So life changes. From one day to another. And I can prevent it. It didn’t ask me. Nor Mathilda. But we are lucky that Mathilda shows no signs aside from the birthmark.

So this will be the blog of a hysterical first time mother dealing with a rare disease. One by one I will add more information about Sturge Weber. And continue more frequently on our battle, challenge, adventure or what is life about.

 

:: Mathilda conquers the world

The last 10 days I spent in Germany. Mathilda and I toured the south of Germany to meet friends and family. We stayed at my parents at Tübingen which is a romantic university town with retro feeling. Hippies and incense sticks included. It reminded me of my own student days. Years, no, wait, decades ago.

 

Compared to Bruxelles the  whole city was covered with children. A lot of fathers with their little ones on the playground, mothers breastfeeding at cafes and lovely toy shops. Felt like an oasis for children.

Mathilda ate her first Spätzle, the national dish of  the south of Germany. Apparently she liked eating proper food so much that she now is growing her first tooth.  Pommes de frites and Brezels watch out!

My culinary treat was a Cronut. Not very typical. But I couldn’t believe my eyes when I saw some a local bakery. To my disappointment  it was very greasy. I don’t understand the fuss about it. It tasted like fried butter.

 

Traveling by plane was easy peasy with M. No crying and no ear pain. The flight to Stuttgart took only about an hour and you are allowed to take a stroller or a car seat for free. Only the other passengers – male ones – proofed to be quite ignorant. Nobody helped me with my luggage in the plane or made room for me. They only starred at us. Here in Bruxelles I always get offered a seat at the tram and got help when entering the bus with the pram.

:: Four months

Two weeks ago we had our second rendezvous with a dermatologist for M’s red spot. All the doctors  – not dermatologists – we spoke to said the there would be a possibility that the red spot, actually broken veins, could also be affecting her eye which would  mean glaucom and her brain which would mean epileptic fits. So we checked eyes and her brain. All test were negative. But still the fear that there is something hiding in M was still present.

So we went to this dermatologist at Hospital Reine Fabiola who is a specialist in that field. Her first words were actually: “It’s nothing serious. And as all the tests turned out to be negative don’t worry. I really don’t quite understand why all the other doctors put you into that panic.”

Hearing her saying this was like giving us a licence for joy. And it took a load as big as the Mount Everest from my mind. It felt like I was freed from a doom. Suddenly lightness, thousands of butterflies. Pink clouds, smiling fairies hiding behind every corner, riding on unicorns. Words cannot describe the sudden relieve.

And now carpe diem. Every day! Every minute! Even when there’s no sunshine here in Brussels. M and I will shine throughout the whole world.

(Make your own fairy & unicorn)