Joshua's Story

Like everyone else faced with this condition, for us it was totally unexpected and came completely out of the blue. One moment I was at the local hospital happily discussing the new baby with the radiographer (who happened to be a one of my daughters friends mum!) and then the next minute she said there seemed to be a problem and called another radiographer in. From there I was swiftly transported up to The Day ward where I was scanned again and told very gently that they thought my baby had some sort of heart problem and I would need to be refereed to Liverpool Women's Hospital for a more accurate scan and diagnosis. I could go right then and there or I could wait a week, I chose to just drive there instantly and find out the worst! So instead of going back to the school I was completing my final teaching practice in that term, I was driving all the way to Liverpool wondering what on earth I was going to find. As my husband works 130 miles away from home in the week I phoned my friend in Chester, and she came along with me for moral support! My husband also tried to get there but the traffic was too bad sadly.

After waiting about an hour I was finally seen by two cardiologists who scanned me and one of them said "What is the worst thing for you" and I remember saying that I thought it would be that my baby was incompatible with life, in retrospect I decided there were many more awful scenario's as well! I was then taken into the "counselling room" where tea was brought in. (A bad sign..tea!) Why do they always offer you a nice cup of tea before they tell you something really bad! Anyway after the kind Dr Kitchner explained the diagnosis which was Hypoplastic Left Heart Syndrome they discussed my options. Right from the moment I found out, something inside me felt that ultimately things would be okay. I was really upset of course but not hysterical. I knew I wanted to give my baby a chance, no matter how small that was . However the Midwife there thought I should strongly consider an abortion due to my family size (I have seven children between the ages of 2 and 15) and the fact I have very little family support, and my husbands job being so far away. At one point she got quite animated which annoyed me! There was so much to take in and think about I was not about to be persuaded into something there and then!

On the long drive home my mind was spinning. I phoned a few close friends to tell them, and my University Mentor, to tell her I still wanted to continue on my course, then I had to tell the children. I will never forget arriving at our house and my daughters running out in excitement to see the scan photo of their new baby, and then the look of utter devastation when I had to tell then about our baby's condition. It was far worse than being told myself! The older ones were very upset for quite along time and still find it hard to cope with, whereas the younger ones take things in their stride more. They wanted to know things like what would happen if the baby died, where would it go?

I took the next couple of days off work and researched this condition on the Internet which was both helpful and at times very depressing as there are only so many times you can read this is one of the most serious heart conditions without feeling total despair! However I also found Hearts of Hope and  Left Heart Matters who both had mums I could E-mail and talk to and this, I found was to be my greatest source of both information and support as the mums could tell me all the trivial things about day to day living and how they coped with this condition and that is what I needed to know.

So many things went through my mind in those first few days after our baby was diagnosed. I considered briefly a termination for the sake of everyone else after I had seen my children's reaction, but for me this was never really an option. I wondered how on earth I would cope with a child that needed so much extra care and attention and selfishly I wondered how many years I would have to take off work to take care of this baby. Suddenly in an instant all your plans and dreams are completely thrown upside down and you have to virtually re think your life again.

Over the next few weeks I began to come to terms with things. We went for an amniocentesis as we were told that if the baby had any other significant problems then it would not survive the operation. Thankfully ours has not! We also found out that we were expecting a little boy, who we decided to name Joshua, as in the bible he is a fighter so we felt this fairly appropriate! We also went back for a further appointment at Liverpool which my husband came to as well and were given a lot of time to talk over Joshua's condition in more detail, now we had some understanding of it. As far as they can see Joshua hasn't the worst case nor the best case but somewhere in the middle. I think one of the most un nerving things about this is the fact that they cannot fully diagnose him until he is born. My recurring nightmare is that they tell me he is far worse than they originally thought. So that is where we are up to now.

I am 33 weeks pregnant. A lifetime of emotions seems to have passed since diagnosis all those weeks ago. I managed to Finnish my teaching, gain a distinction, and graduate as well. I was grateful for the distraction of school and all the work. We have considered many options and have decided to go to Liverpool to deliver Joshua and then stay at The Ronald Mc Donald house together as a family. I think that if Joshua is only to have a few short days with us we need to be together as a family so the children can get to know their brother and have some memories of him. We have made photo albums and diaries and bought him a teddy with his name on and some blankets for Intensive care. We have also sent out birth announcements in advance explaining his condition. This has helped me feel that he is real and for however long his life is we shall have as many memories as possible of him. The Doctors keep saying how well I am taking this and how practical I am, but for me this is the only way I can deal with this. I think everyone has to find their own way. No one has the right to impose how they feel you should be dealing with this.

Before Joshua's diagnosis, I had no idea of the range of extreme emotions I could feel or the sort of issues that I would have to deal with. I will be forever grateful to the many wonderful friends that  I have made through these sites who have been there before me and guided me through.

I felt it was important to write about Joshua for a variety of reasons. I felt that by making a site for him (with of course the marvellous help of Deb!) his life would count in some small way. I have found these sites so helpful I hope mine can help others faced with this prognosis. I also felt it was a good way to communicate on Joshua's progress as we wont be at home to answer the phone and it takes the stress out of people wondering if they should contact us or not.

I hope that you will log on and keep in touch with Joshua's progress. Whatever the outcome is we are looking forward to meeting our son in a few short weeks and helping him cope with his first operation a few days after he is born, and enjoying every moment we have with him.

Update:
Wednesday 14th August 2003. 35 Weeks.

Today I went back to Liverpool Women's Hospital for another check on Joshua. It was a very positive visit and they managed to measure his Aorta, which came up as 2.5mm (under 2mm and they did not think it was good for surgery) also they estimated his weight at 2.1 kg (again under 2.5 kg isn't so good for surgery) .As he still has at least a month to grow and develop the signs at the moment for surgery look good. Of course at this stage there are still so many unknowns that at times I feel I am clutching onto straws but at least it was encouraging and he is not any worse.

Still keeping busy all day decorating and D.I.Y. ing as I find this is the only thing that stops me dwelling on him and his condition. I have been so encouraged by all the people who have read this site and emailed me, as well as all the new friends I have met through the internet who constantly email me and keep me positive. Thank you all.

Update
Sunday 24th August nearly 37 weeks.
Beginning to feel more apprehensive about going to deliver Joshua now. No matter how positive I try to be I can't quite get away from the thought that in a month my baby maybe dead. I do feel calmer now as I have had to face the worst case scenario and deal with this in my mind. When you do face it everything else that could happen becomes a lot less stressful . I still find that I have to keep very busy as this occupies my mind. Thankfully there is so much to do in the house that is no this is not a problem!!! I have also applied to study part time for a Masters Degree in Theology as I figured this will give me something else to think about other than him!
The children ask a lot of questions about Joshua now and the little ones are looking forward to going to stay at the hospital, although I am sure the reality of the situation has not yet hit them and I do worry about how they will cope with this when it does. The older girls ask a lot of questions now, and deal with their own emotions in very different ways.

I have been so blessed and encouraged by everyone who has visited this site and emailed me. Every email does help and keeps me going!

I do ultimately feel quite calm, thankfully. I do feel that whatever happens we will all survive this. I am sure it will not be easy , but I am just so thankful for all my wonderful children and my husband, I would truly hate to be facing all of this on my own.
I will try to write one more update before I go into hospital in three weeks time.....Argh!

Update:
Monday 8th September 2003, Nearly 39 weeks.
Well today I went back to the local hospital for my final check up. I am so glad that they have agreed to deliver me there as I am far happier and relaxed about this and it means I am not that far from the children, they may even be able to see Joshua before he is transferred to Alder Hey.

I will be induced on Monday 15th September at 8am, although of course it could take many hours so think of me!!! I am glad that I can hold on till nearly his due date as this will give him the best chance.

I was also told to rest!!! as I am showing some signs of Pre Eclampsia which is so annoying as decorating kept my mind off everything, now I think more1 not a good thing in my case!!! glad that all the waiting will be over at last! As this maybe my last update before Joshua's birth there are many people that I would like to especially thank who have kept me going along this journey. I am glad that I have a faith in God, as without this I am sure I would have lost the plot long ago. My beliefs have given me strength and confidence when I would have had none.

I want to thank my husband and family for keeping things in perspective and keeping my life normal throughout this very unusual time.
To all the many families who have taken this journey before me and filled my email box with love and encouragement along the way! Especially Deb, Kimberley, Imogen, Claire, Ann, Jacqui and Rebecca. To Christine, my dear friend who has filled endless cards, notes and txts with love and kind words just at the right times. To June and Jackie, both of whom I had the pleasure of working with, for their love and support throughout. To my friend Marion who has always offered practical support which has been of so much help over this period.

For all the medical staff who have been so kind to me throughout this time: Dr Kitchner and Rob at The Liverpool Women's Hospital, The Cardiac Liaison Nurses at Alder Hey Children's Hospital, My lovely Midwife Anne, and my local Consultant Derek, without these special people my appointments would have been so much more stressful

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And lastly to Joshua, who has taught me so much already. That I am much stronger than I ever thought I was, for teaching me that so many things I worry about are just so insignificant really, and for reminding me to appreciate daily all that I have and not take my children or family for granted. I look forward to meeting you soon now!

14th September 2003. 1 Day to go!
Well its 11.30pm and everything is packed and ready. We look like we are moving overseas again!!! It is odd to think we could be there for only a few days or up to six weeks. Today was a surprisingly good day considering all we have to face. I am glad that it will all be over soon now.

I have been so encouraged today that all around the world churches, prayer groups and individuals have prayed for us and Joshua. It really has helped me cope so much.

Thanks to everyone for your emails. Sorry I have not been able to reply, please know I have appreciated each and everyone.
The next time you log on, hopefully you will be able to see Joshua as well! At last!!!!
Better go to bed, big day ahead. Fiona.

*Please note for Fiona's entries on Joshua's birth please use the menu to the left.