Early days
I'd be back in work for about two weeks after the early arrival of E, when I received the call from home and everything turned upside down. This was 15 months ago.
A familiar story to many, the health visitor knocked on saying that the routine heel prick test had revealed a suspected case of CF.
Before grabbing my bike and blasting home - very understanding employee - I quickly searched online for CF and found the CF Trust website.
The only thing I can really remember was the phrase 'life-shortening'. Our journey had begun.
The next day we found ourselves in RMCH talking with a group of strangers - who were all very nice - they were explaining the treatment protocols and the situation.
They explained how treatment had come on leaps and bounds in recent years and that there were many reasons for optimism.
We also had to put E - who was more of an 'e' at the time weighing about 6lb - through a sweat test.
The 'gold standard' test for CF, involved stimulating the skin on her little arm with an electrical current, wrapping a cotton swab on said arm in plastic and measuring the salt level.
Harmless really but done in a blur of emotion and the unknown. Anyway, it didn't work, she didn't sweat at all and we had to do it all again later.
We had our DNA taken on a mouth swab and signed E onto the CF register.
Instructed in physio, the next stop was the chemist where we came out with a big bag of unpronounceable medication.
Reflections:
This was a tough time looking back. There's a bewildering amount of info to retain and process. You need to adjust pretty quickly to the new reality.
We were now members of a club which we never wanted to be in. Our little girl had a disease and there was nothing we could do about it.
I began looking - in quite a lot of detail - at treatments and ones working their way through the approval processes.
Although the most horrifying news you could ever imagine, the diagnosis is, undoubtedly, a good thing. Identify early, treat accordingly are vital elements which have helped deliver the growth in life expectancy.
I also realised quite quickly that being ok with CF wasn't a destination in itself. We'd have ups and downs along the way. I also determined that CF would never destroy the magic of out time together with E.
A familiar story to many, the health visitor knocked on saying that the routine heel prick test had revealed a suspected case of CF.
Before grabbing my bike and blasting home - very understanding employee - I quickly searched online for CF and found the CF Trust website.
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| The CF Trust homepage |
The only thing I can really remember was the phrase 'life-shortening'. Our journey had begun.
The next day we found ourselves in RMCH talking with a group of strangers - who were all very nice - they were explaining the treatment protocols and the situation.
They explained how treatment had come on leaps and bounds in recent years and that there were many reasons for optimism.
We also had to put E - who was more of an 'e' at the time weighing about 6lb - through a sweat test.
The 'gold standard' test for CF, involved stimulating the skin on her little arm with an electrical current, wrapping a cotton swab on said arm in plastic and measuring the salt level.
Harmless really but done in a blur of emotion and the unknown. Anyway, it didn't work, she didn't sweat at all and we had to do it all again later.
We had our DNA taken on a mouth swab and signed E onto the CF register.
Instructed in physio, the next stop was the chemist where we came out with a big bag of unpronounceable medication.
Reflections:
This was a tough time looking back. There's a bewildering amount of info to retain and process. You need to adjust pretty quickly to the new reality.
We were now members of a club which we never wanted to be in. Our little girl had a disease and there was nothing we could do about it.
I began looking - in quite a lot of detail - at treatments and ones working their way through the approval processes.
Although the most horrifying news you could ever imagine, the diagnosis is, undoubtedly, a good thing. Identify early, treat accordingly are vital elements which have helped deliver the growth in life expectancy.
I also realised quite quickly that being ok with CF wasn't a destination in itself. We'd have ups and downs along the way. I also determined that CF would never destroy the magic of out time together with E.
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