Sunday, April 28, 2013

Time To Fade

Three and a half years ago God handed me something very unexpected. Something nobody ever expects-a cross so different to the plain old one I was already carrying. The difference was that this cross was ablaze with flame and in the middle of the flame the name of a child.
Nobody will willingly run into a blazing fire but even a stranger will do that for the sake of a child and though I couldn't be called a stranger, the presence of the child compelled me to grab that cross. No sooner had my arms enclosed on that burning wood I realised that God had handed me something else as well-a pen. So finding that pen in my hand I started to write and what has come out of that is this story that I am convinced is not mine but His.

There were times when I was writing this blog that I wondered why I was even writing in detail that left me very exposed. Leaving myself open to criticism, or pity which drags one down, or even worse...praise that can overtake the ego and blind one to the reality that no one is more special than anyone else.

I have just taken a weekend out to be silent, to put things back in perspective, to pray and to think. I have done a lot of thinking and I think I can see some things I didn't see before.

I realise that the cross I have carried this last few years was MEANT to be ablaze because God wanted it to be seen. Why was the pen placed in my hand other than to let the flame take hold. I hadn't written much more than a postcard in all the years since I had left school and suddenly this thing was writing itself. I didn't know whether this was going to be a tale of bereavement or of survival but I did know that one way or another I wanted it to be something that would encourage another family to give their child a chance of life. I will never know till the last day whether any baby is alive because of what I wrote but that doesn't matter. My own embarrassment at my 'public suffering' means nothing to me because I can clearly see that (and I'm unashamed to say this) God wanted me to suffer publicly .

There is something seriously wrong in this world that goes far beyond the 'something rotten in the state of Denmark' and that is the gutter level of value for life and in particular life which is considered imperfect. The hopelessness displayed by the medical profession is like a cancer. Those supposed to nurture life being the very ones initiating the taking of life. I have heard so so so few stories of doctors who encouraged families to welcome their imperfect child as much as the perfect one.

So few.

So few friends, so few relatives who encourage a 'yes' to life.

So this child that was placed into our lives was given a job of sowing hope in a ground that is arid. I didn't plan for her story to take wings but it did. I didn't know she was going to light up a dark path but she did. All I knew was she was mine and my job was to love her...that her story became public is irrelevant to that.

Now I see that something has changed. Louise is alive. She has surpassed all our expectations and dreams. She has been a witness to hope. She is a witness to life and it's immeasurable value. Her job is done.

Since before she was born I have shared her with all of you.

Now I am taking her back.

The cross that was on fire with a flame for all the world to see is now something different. The fire is replaced with glowing coals to be carried by me and John and Louise in private. My future tears will not be shed on this blog but on my husband's shoulder. We are the parents of a little child who has physical and emotional scars which need nurtured in private. Her long term future is uncertain. We don't know what bridges she will face but we will help her over them even if the waters rage beneath. Her life may have limitations but which of us doesn't have limitations? None of us. This we know..she may have half a heart but it lights up the world. We are forever grateful for her.

Of course I will continue to ask for prayers whenever we have appointments or procedures coming up. They will be mostly on Facebook. But overall I think the story that God has wanted me to tell is told and I hope I've done it well.

Finally, even though the huge flaming cross has been replaced by my private one, I'm looking down and seeing that the pen is still there. I will continue to write over at Raindrops On My Head. My hands have been burnt a few times by what I have needed to write but on the whole I hope it's an uplifting read. Please join me there. You might even find Louise there from time to time.

Thank you all for being part of Louise's story.

Please continue to pray for her.

Jennifer & John (and Louise) xxx

Saturday, April 6, 2013

On The Shoulders Of Giants

For the last three and a half years the cloud of Fontan has been hanging over us, we always knew it was inevitable and really I never looked much further than that.  Now that it's over and we're getting back to normal I have been looking into life beyond Fontan and the long term implications for Louise.  I have really only had one friend online who is a 'heart-mom' and her son has a different condition to Louise's.  Last week I joined a FB page just for Tricuspid Atresia.  It has opened my eyes, and in particular this conversation with a girl who was one of the recipients of the earliest Fontans.  It was in response to a post by a pregnant mom whose child has just been diagnosed with TA.

Because I can't get the words this girl has written out of my mind and her testimony to her parents, I asked her permission to post them here.  I think it shows the steadfast determination of those young parents who refused to give up...Please read this..

Wendy~ I'm not a parent, but a person with a feisty human spirit living with the single ventricle condition T.A. I'm 39 years old, born in 1973 when the Fontan surgery was only merely in its infancy. I wasn't diagnosed until I was 3 months old. My parents were 19 years old at the time and devastated to be told that I wouldn't live, but my mum never gave in and never stopped searching for the best treatment.

I had my first surgery a waterstun shunt at 18 months old. The medical professionals involved in my care did not think I would make it out of theatre alive...but a day after surgery I was bouncing up and down in the cot...Palliative was always the word emphasised for this surgery. By the time I got to 5 I started to deteriorate and again, my mum wouldn't take no for answer and continued to push for better treatment. When I was around 7 and very ill, by chance my cardiologist at this time had been to a paediatric cardiology conference. There he met Professor Somerville and Professor Magdi Yacoub...The most internationally renowned cardiac surgeon and congenital heart consultant in the UK at this time. I was referred from there on in to the care of Professor Somerville and in November 1982 when I was 8 years old I had my Fontan surgery performed by Professor  Sir Magdi Yacoub.

Since then I have NEVER looked back. I worked hard at school, did well academically and went onto study at university and developed a professional career. My Fontan first began to fail in the 1990's and I managed to have intervention to keep it working for longer. In 2006 I learnt that its failing further and discussions have ensued regarding my future. I declined conversion Fontan surgery (converting my old style Fontan to the newer version ie TCPC) due to the high risk factors involved. I've been told that heart transplantation is highly unlikely in my case, but I keep on ticking and living life to the full, grateful for all that I have had and continue to have ; ) I am at a crossroads in my life with regards to continuing my career, but I know that I have done everything possible in my life so far and achieved what was beyond many peoples expectations. I hope that my story will inspire you.

 If there is one piece of advice I can offer I would say encourage your daughter to reach for the moon and back and more. She will learn to live within her limitations, but make the most out of her life also. My mum has done all this and more for me throughout my life and I wouldn't be the person I am today if she hadn't : ) I am a great believer that hope and human determination prevail and the sky well and truly is the limit! There is an organisation in the UK called Little Hearts Matter. They support families with children with single ventricle heart conditions (T.A, P.A, HLHS, HRHS, Double inlet left ventricle, Double outlet right ventricle). You may wish to check out their website. Equally in the UK the Somerville Foundation supports adults with all types of congenital heart disease. My own story is published in issue 72 (most recent newsletter). In the US and Canada there is the Adult Congenital Heart Association who again support adults with all types of congenital heart disease. Hope some of this information helps. Take care.

 Also just to say there are others out there just like me!! ; ) So please don't feel alone...

 Me~Wendy, it has certainly helped ME! While we were looking toward Louise's three surgeries, I never looked to much beyond that. Now that she has just last month completed all three, for the first week the cloud on my horizon was lifted. But it has been starting to gather again as I've been pondering her future and her lifelong expectations. I think it is a foolish train of thought, medicine never goes backwards, it only goes forward and that is what all of us need to focus on. I recently discovered Little Hearts Matter and their teen website and it is so positive and full of hope. We were given no hope to clutch at during my pregnancy (apart from our cardiologist) but Louise has shown that negative doctors are discounting the strength of the human spirit  the determination of parental love and the power of prayer.

Wendy~Hi Jennifer Kehoe. I think you are right in that looking beyond the 3 stage surgeries is difficult in today's terms and yes medicine has moved forward significantly so since I was born. However, as you can see in my generation, we had no staged surgeries planned and we did not even know what would happen month to month, never mind planning the next surgical phase. All we had was sheer human determination, strong, supportive and loving parents and a wing and a prayer so to speak.... and boy did we hope and pray that we would find a cardiologist who knew and had the insight to know what they were doing. I found that and more when I got to 8, but I was virtually dying on both occasions of surgery before it got to this stage as few really only had the expertise to treat me.

My first surgery was merely 'palliative' to prolong my life, but nothing was known beyond this and by the time I got to my Fontan I had very little healthyish childhood as I was so poorly and significantly cyanosed.  I owe my life to Professor Somerville and Professor Yacoub and although they were pretty much grappling in the dark as the Fontan surgery was pioneering at this time, I and my parents trusted and believed in what they were doing. As for my generation now, yes medical advancements have moved on, but sadly for most of my generation we have not and will likely not benefit from this progression. The staged Fontan surgeries will serve and has served better the generations of now and those to come and childhood is near to normal, but as for us 'oldies' we are back to our initial prognosis in many ways...being the pioneers once more as to where to go from here, of which quite frankly appears limited in terms of our options.

But above all I am thankful that my life has contributed to making things significantly better for the younger generation to enjoy their childhood and young adult years as healthy as possible. You see all the times I have been asked to contribute to medical research for single ventricle conditions via tests (some very invasive like having a 24 hour catheter inserted into the neck area to measure pressures) I realise that every time I see a single ventricle child running or riding a bike, my contribution and many others of my era, have not been in vain. I wish you and your family well on this journey ahead, its peaks and troughs all the way....but worth the ride all the same!! ; )
And just as I always say 'life as a single ventricle GUCH goes on'...... : )
Take care. x

Me~Wow! Wendy, we have a lot to be grateful to you for.

 Wendy~Hi Jennifer  Yes its been tough for our generation but i think i probably speak for many of us, if not all when i say we take comfort, hope and reassurance that things are improved for today's children and young people and their families. I went to the little hearts matter open day recently and i was so inspired by all the young people and families i met. Today you are a better informed group, with greater support networks now than we were and i think its amazing! Its only in more recent years that i have met others with single ventricle conditions of my generation and i truly value it. But i also think its crucial that the oldies and the youngsters learn from each other in order to truly move the care for all single ventricles forward in the future ; ) Wishing you and your family hope; happiness and a love of life. X

The bottom line is nobody, least of all us, knows what Louise's future holds.  We know she will get to adulthood.  Beyond that we are dependent on the research which is now taking place.  We are thankful to the families who faced an unknown future and have hewn the furrow in which Louise travels.

Thank you, Wendy, for allowing me to post this.

And to honour those families and the children who lived through Fontan in it's earliest forms, can I ask all of you to consider registering for organ donation.  The criteria is different in every country and I will post the links for the different countries shortly but today perhaps discuss it with your families.

The award-winning pianist Paul Cardall was born with Tricuspid's his story, it is beautiful.