Cystic Fibrosis: Our Initial Fears As Parents.

You never think it will happen to you. Ever. When things started to go wrong following Harriet’s birth, even up until we were sat down and told that she had CF, I still refused to believe it. Looking back now she had all the obvious signs of meconium ileus, generally the first indicator of CF, but it wasn’t something any of us were familiar with.

I remember being annoyed at how often I was changing her babygro as she was bringing up green stuff a lot. I remember putting my make up on two days after she was born, not worried in the slightest that she had yet to pass meconium, thinking it would happen soon and we would be off home. Sadly, this was not the case and we ended up being transferred to the local children’s hospital.

After life-saving surgery and an agonising ten day wait we were finally told that Harriet had cystic fibrosis. During that wait I was told repeatedly not to Google. So obviously I did. We were told there was an eighty percent chance that this bowel obstruction had occurred because of CF.  Again, I refused to believe it. How could it be possible? We had no family history, a healthy three year old and zero knowledge of the condition. Now I know it can happen, does happen and you have to just deal with it the best way you can.

The biggest fear for us was and is life expectancy. During my frantic Google searches before a confirmed diagnosis, that was what came up the most. Life shortening genetic disease, average life expectancy, median life expectancy, all buzzing around my brain. Even now, eight months on, it’s very hard to deal with. The latest information on our good old NHS website does state, however, that babies born today with CF can expect a near to normal life expectancy and that’s what I’m going with.

Our second biggest concern was Harriet’s quality of life. What could we expect? Knowing virtually nothing about cystic fibrosis at the time I was envisaging a lifetime of hospital admissions and not being able to do anything other children do. Thankfully we were wrong and apart from the odd thing there is virtually nothing she can’t and won’t be able to do.

I remember crying and crying thinking that she won’t have a family of her own. Wrong again. I have since read of so many CF patients who have children. Who knows, she might not want any anyway! My husband, typical bloke, wanted to know whether she would be able to go out with her friends when she’s older and drink alcohol if she wanted. Of course she can! It seems so silly now that we were so clueless but it was such a huge shock to us at the time.

Whether she would be ill all of the time was also something that crept up a lot. The answer to that I still don’t know. CF affects each individual in different ways. Yes, she has had coughs and colds like any other baby but who’s to know if that’s just nature or CF to blame.

The question of whether I would be able to deal with all of her medication also troubled me. For weeks, possibly months, I had nothing to do with her twice daily set of medicines. I couldn’t get my head round it all. I would panic thinking about having to do it when my husband eventually went back to work. Now I could do them all in my sleep; I can measure out the amounts without looking at the syringes, I make up my own medicines, and share out the contents of capsules.

One of the CF team said to us on that first day of diagnosis that this will all become normal, YOUR normal, and when she said it I didn’t believe her one little bit. She was right though. As time goes on things get gradually easier to accept and deal with. We are so positive for Harriet’s future and there are so many great things happening in terms of treatments. I just wish I could have read this eight months ago!

Fundraising Update

Anyone used to watch Blue Peter in the eighties? Remember the totalisers they used to have? Well that’s what I feel we need right now!  Since Harriet’s birth last October and subsequent diagnosis of CF we have managed to raise almost SIX THOUSAND POUNDS (I am shouting!) for research into this awful disease. Let’s just take a quiet moment to appreciate that.

Through various fundraising events we have hit this total and we will not stop until there is some hope for my daughter and all others with cystic fibrosis. None of this could have been achieved without the support of our families and friends and we just cannot thank them enough. Our most recent event, pictured below, was a quiz night which was a great success. The total raised was one thousand pounds, we were at nine hundred and forty but the band who played on the night kindly donated their fee to take us to the one thousand mark. Amazing stuff.

This was the second quiz night organised by my family and I remember how I could hardly speak to anyone at the first one without wanting to cry! The thought that all of these people had gone to so much of an effort to help my baby was very emotional.  It is very true that as time goes on you do get stronger and stronger. Harriet came to this quiz and was such a little star. She was passed round everyone without any fuss. She particularly enjoyed the raffle, see picture below, for which we had some fantastic prizes. This leads me into some thanks for all those companies who kindly donated: The National Trust, Beamish Museum, The White Lead, Jillian Dixon Photography, Relax and Glow, Salon Forty, Julie at Beautiful, Linda Pearson Floristry and all those who gave us bottles and gift sets too. All truly appreciated.

We have other things ongoing which you can help with too. My gorgeous Auntie also sells her artwork for Cystic Fibrosis on the first Sunday of every month at Harton Quays Craft Fair near the Customs House. Despite the wind and some gazebos going off into the River Tyne (!)  she had a great day of trading this month. Please pop along to see her next time, she is a very talented artist.

On Saturday 20th June we have a stall at Westoe Village Fair where you will be able to purchase hand made crafts as well as a selection of art. It would be lovely to see some familiar faces supporting our cause.

We also still collect used stamps which can be turned into cash for The Stuart Gordon Fund. Recently we have received so many and for May the charity received a donation from Citadel Stamps for £872 and I am sure we will have had a lot to do with that! Many thanks to all of those collecting for us, please keep going.

Finally my husband Chris, his sister Emily and my friend Marie are all doing the Great North Run in September for the CF Trust. They would really appreciate some sponsorship to keep them motivated with their training (ahem, Chris Corr!)  The links are below, please help if you can.