Organ Donation

Just typing the words organ donation makes me feel a little weird. Why? I don’t know. Ashamedly it’s not something I’d ever really given much thought. Well, who would unless you or someone close had been personally affected? I have, however, always known that I would want to be an organ donor. I’m sure I had an old-fashioned donor card in my purse as a teen!


I am of the thinking that when I am dead, that’s it for my body and whatever can be done to it. If I have anything worth giving to someone then even better. Naively, I never thought it would become something I would become quite vocal on but since the birth of our daughter last year things have certainly changed.


After Harriet was born and then diagnosed with cystic fibrosis I remember hysterically saying that she could just have a lung transplant and then she would be better. (I was a little crazy at this time and also knew nothing about CF!) As time has passed and I have educated myself on CF I now know that it’s just not as simple as that and things have to be pretty bad to be placed onto the transplant list.

Even in the early months of becoming a CF parent I wouldn’t and couldn’t read anything about transplantation. I refuse to believe, even now, a year in, that it will happen to my girl. As I got stronger I found myself able to read stories about those who had been given the gift of life and had a double lung transplant. Some amazing stories that have changed lives but sadly others not so. The other side to this is the heartbreak of those waiting on the transplant list. To be waiting for someone else to die in order that your life is saved is something I cannot begin to imagine.


Anyway, the main point of this week’s ramble is to urge anyone who hasn’t already to sign up to be an organ donor. Gone are the days of carrying a card and now it can be done with a few clicks on your phone. Trust me, I did mine and my husbands’ in minutes while he was watching some tripe on TV. Even if you don’t get round to signing up please make it known to your loved ones that you wish to donate your organs. They can make the decision for you if needs be but obviously signing up online really seals the deal!

More people die on the transplant list waiting to be given a second chance than those who receive it. This week I have read or watched so many devastating stories of those in desperate need of a transplant which I have linked below.

Please let me know if you have signed up. Even if I get one person to do it after reading this I will be over the moon!

https://www.organdonation.nhs.uk/register-to-donate/

https://www.facebook.com/HopeForMoore

http://www.channel5.com/shows/gift-of-life/amazing-stories/my-story-sam-brooker

 

 

 

 

 

 

 

 

 

 

 

Harriet’s Birth Story: One Year On.

“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. We knew what day she was coming – Friday 17th 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 or anyone you know has faced similar circumstances please comment below or get in touch via Facebook or Twitter.

A Week At Whinfell

When friends of ours asked us to join them on a trip to Center Parcs earlier this year I said yes almost immediately. After the year we have had following the birth of our second daughter I now view life a little differently and want to make the most of every single second. During one hospital stay I actually spent a lot of time making lists upon lists of all the places I wanted to go as a family. There’s nothing like a spell of incarceration to make you reflect.


So last week we went off on our first ever family holiday! Even though the journey was only a few hours I still felt a little anxious about remembering all of Harriet’s medication. The only thing for it was to take them all! I literally emptied the medicine cupboard into a bag, just in case. We have a sack full of syringes so naturally I took them all too. I’m sure in the future I will have it all sussed but for now this is how I roll!

With the car bursting at the seams we headed off with one very excited toddler and one happy baby as she got a firm hold of the iPad! Upon arrival I was really impressed with the way you check in. Very futuristic! It’s a drive through system, then you unpack your belongings, return to the car park and leave your car behind for the duration of your stay. Great in terms of safety for your children. The only things to watch out for are bikes!


We stayed in one of the woodland lodges which were more than sufficient for our needs as a family of four. We took our own travel cot (pointless as she never sleeps in it surprise, surprise!) but a cot and high chair were provided. Other personal highlights were the log burner in the living room and a dishwasher.


Most days were spent swimming in what we all agreed were the best facilities ever. The wristbands given on check in act as accommodation keys, locker keys and you can also use them to pay for things in the village. We lucked out with the weather so could also enjoy the outdoor pool as well as all the attractions indoors. The only negative that happened was when poor Harriet caught one of the waves right in the face! Twice! We soon learned to keep her out of the main pool when the waves were on, maybe a little too much for a baby.

We had stopped in Penrith on the way to pick up some shopping for our stay in a bid to save some money as we had heard things can get very expensive. I was quite surprised in that respect as we didn’t spend half as much as we had anticipated! However I do think that is down to the ages of our children, three and eleven months. Nancy is more than happy to go swimming and play in a park all day, every day!


Towards the end of the week we went bowling, again a reasonable price, which we all loved. My personal favourite though was the children’s disco; how times have changed! It was so lovely to see Nancy actually go off and  join in with the dancing; the competitive element and the lure of prizes for the best dancer certainly helped. In fact, on the last night she was extremely disgruntled to not win the first prize and marched herself to the front in hope of catching the DJ’s attention. Ha!

Towards the end of our stay the staff were busying themselves wrapping all the trees in fairy lights for the upcoming festive period. As a group we all said we would love to return at Christmas. I can only imagine how magical it would be for the little ones. Sadly, with Nancy starting school next year I don’t know if we will return when we are restricted to term time only dates so my advice would be to take your little ones now before they want to do all the mega expensive activities, and before they start school!


Have you been to Center Parcs? Please leave your thoughts below as I would love to hear from you.