Silje is a young mum from Norway. Her beautiful baby Marion was born with Epidermolytic ichthyosis. She writes of the unpreparedness and worry of having a baby with a visible difference and disability, and also the way Marion has changed her life for the better.
12 of July was a really warm summer day and I was very pregnant with my second child. Except that, it was like any other summer day. I had something which I thought was mild contractions that day and I was so ready to meet my little baby girl. The contractions got worse throughout the day and by 4. 30 pm we had to call my mother in law so that she could come and watch our then two year old.
The labor and delivery was a fantastic experience! A perfect birth. And our little baby girl was also perfect! She looked a bit different from what we expected. She had a thick layer of white membrane on her body, but we were told that it was totally normal. After a while my husband noticed that she had no skin on her finger. After this everything went downhill.
She was examined by numerous of doctors, but no one had ever seen anything like this. They also noticed that large parts of the rest of her body also missed skin.
The next day she was sent to the Newborn intensive care unit. I was more heartbroken and scared then I have ever been. No one could tell me what was wrong with her. The only thing they could tell me was that she was in severe pain, had to have iv antibiotics and that they had to monitor her because there was a risk of severe dehydration. I also weren’t allowed to hold her except when I nursed her because she was in so much pain. Why did this happen to her, to us? What had I done wrong? Did I do this to her? My thoughts were running wild.
I thought I had prepared for the possibility to get a “different” child. I had thought of the possibility of getting a child with a disability and thought I was comfortable with the thought. But nothing really could prepare me for this. To see your child suffer and to not know why.
Two weeks after her birth we got the diagnosis. Epidermolytic ichthyosis. My heart broke once again. I had never heard of this before, but I was told that it was a chronic and severe skin condition. How would we manage to take care of her?
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.
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