Calm in the Chaos: February 2015

"The test results indicate that Harriet does have cystic fibrosis.”

Words that changed my family’s lives forever and, in part, lead me to write this blog. I have always wanted to start one but never really had the courage to put myself out there. My aim is not to write entirely about cystic fibrosis as it does not and will not define who Harriet is. Naturally I do want to reach out to people who may be in similar circumstances; I have spent time looking online for blogs from parents in a similar situation but with little success. I do not claim to be an expert on CF - in fact I am still to find a succinct way of describing the condition to people as it is so complex. This is all very new and raw to us so it is going to be a steep learning curve. I also have another daughter – Nancy - who, when she’s older, would no doubt be very annoyed if I had an entire blog simply devoted to her little sister! The following is an account of the most gut-wrenching, heart-breaking and painful two weeks of my life. Hopefully the hard part is over and we can go about our lives as normally as possible.

We knew what day she was coming - Friday 17^th October 2014. Amazing. After a twenty-six hour labour/horror show with Nancy three years previous, a planned caesarean section as opposed to an emergency one seemed like the dream scenario. In fact the consultant informed me that she had had one and it was ‘like going on holiday’ so who’s going to argue with that? In typical ‘me’ fashion I was all set and gowned up with the anaesthetist ready to go when it occurred to me to ask what would happen if an emergency came in at this time. I was told this had never happened before but, of course, you can work out the rest. Me and my big mouth! So instead of being born at 9am as planned, Harriet Katherine Corr entered the world at 2.57pm later that day.

Cue lots of crying, cooing, gushing, as you would expect. She was a good weight, 8lb 2oz, and looked a tiny bundle of perfection. She latched on easily and I couldn’t believe my luck. This compared to by first birth experience was indeed a walk in the park. After a few hours she began to vomit which, of course, no one really batted an eyelid over. It’s what babies do, right? Only this continued. We got to Sunday morning and she was still being sick, and had not passed meconium. At this point I wasn’t even concerned as all the hospital staff had reassured me that everything was fine. I began to get ready and pack my things thinking we would be going home later that day. Sadly this was not to be.

The midwife, who had been there on her own for what seemed like days (but that’s a blog post for another day), came to me and expressed her concerns over the lack of the first dirty nappy. She told me she thought my perfect new baby had something wrong, and that she would have to be taken to Special Care for further investigation. I was terrified. I rang my husband Chris in a blind panic and garbled something about him needing to get down to the hospital as soon as possible. Even now I am struggling to find the words to describe the thoughts and emotions running through my mind. We sat in an old, disused room at the hospital for hours until finally we were told we could go down to see her.

What greeted me was something I will never forget - my gorgeous little baby wrapped in an incubator with a tube coming out of her nose. What? I just couldn’t wrap my head around what was going on here. We have always counted ourselves extremely lucky in that we have a fit and healthy family so this was very alien to us. The doctor on duty that day had X-rayed Harriet and had spotted a blockage in her bowel which explained the vomit and lack of meconium. We begged him to tell us what was wrong but he said he could only guess at this stage. I do, however, remember him saying it could be the first sign of cystic fibrosis - I asked Chris what that was and all he could say was that it wasn’t good. We waited for hours, crying non-stop for an ambulance to transfer us to a larger children’s hospital. This hospital would become home for the next few weeks. In amongst all this chaos was a calm, content little lady probably wondering what all the fuss was about.

Over the next few days she was poked and prodded and tested for all kinds of things. The outcome was that the problem was one of three things: Hirschsprung’s Disease, cystic fibrosis or nothing at all. Naturally we were hoping for the latter. At five days old Harriet faced life-saving surgery to unblock her bowel leaving her with an ileostomy which was to be reversed at six months old. Even now it is difficult to recall having to carry my tiny new baby girl down to theatre and pass her over to a surgeon. As she was so small they struggled to find any veins and ended up shaving her hair and placing a cannula in her head. It broke my heart. The operation was a success and she was left with a stoma and a mucus fistula. With the operation over, we were now left with an agonising week-long wait for all the test results to come back to see what had caused the blockage. Late one evening a doctor came to tell me that the test for Hirschsprung’s had come back negative. I rang Chris who was immediately devastated as he realised that this meant an 80% chance of Harriet having CF. I, however, refused to believe it, and still clung to the 20% chance of it being nothing and just some freak occurrence.

Finally, after a week and a half of camping out in the hospital, passing my time on the breast pump and sending crazy, nonsensical messages to friends and family, we were told that Harriet had indeed received two copies of Delta F508, the most common of all CF mutations (of which there are thousands of variations.) Nothing ever prepares you for that kind of news, especially when there is no family history, and you already have one fit and healthy child. One in twenty five people carry the recessive gene for cystic fibrosis. Chances are Nancy will be a carrier of the gene too.

Thankfully the hospital has a huge CF team who arrived to speak to us not long afterwards. They were fantastic and were so positive. Treatment has improved a lot and it seems the future is not as bleak as we may have first feared. We had to learn fast as Harriet has up to eleven medicines per day, pancreatic enzymes up to ten times per day and physiotherapy twice per day. Of course we are not oblivious to the challenges that we potentially face as a family but we remain hopeful that one day a cure will be found, if not a treatment as good as.

Two days later we were discharged from the hospital. On our way out the doctor who had broken the news to us asked if we were going for a walk and appeared hugely shocked that we were actually going home. Most babies born under similar circumstances are in hospital for a lot longer, sometimes months. In fact some babies with meconium ileus don’t survive in the womb so we count ourselves very lucky to have Harriet at all. Hopefully this is indicative of just how Harriet is going to deal with this in the future. In such a short space of time Harriet has dealt with more than some people would face in a lifetime, and I am truly honoured to be her mam.

If you're still reading please watch the video below. It broke me for a few days after watching but highlights the importance of raising awareness, raising money and ultimately raising our hopes for the future.