Brain Scan Report.

I don't know how long it's been since Louise was diagnosed with PHACE(S) Syndrome but she finally had her MRI/MRA on Wednesday just gone at the same time as she had her heart scan. The rigmarole of cancelled scans, changed dates and so on is water under the bridge and I won't complain now about that.

Having Toast & Juice & Feeling Very Wobbly

The cardiologist looked at the heart scan straight away and came down to see me while Louise was having her toast and was still pretty dozy after the general anaesthetic.  He's very pleased whit how everything is looking, her PA band is holding up great and doing it's protective job very well.  Her Glenn is looking good too.  Everything as well as can be expected.  Her blood oxygen level is good for a Glenn child and her only symptom really is her breathing.  He said he doesn't want to put her into surgery (which I was expecting since her last visit to be after Christmas) until she is seen by pulmonary to rule out any asthma or lung issues which might be accounting for her breathing.  He asked the nurse to ring them and ask could they come down and see her while she was there.

The answer came back that they were too busy and we'd have to make an appointment...and there were no appointments available for THREE MONTHS!!!!

So from building myself up for surgery after Christmas, God knows when it will be now.  I was fit to be tied on the way home and so deflated but on the good side, if her surgery is delayed, the beautiful new state of the art children's cardiac unit will be completed (this summer) in time for us to benefit from it and I won't have to sleep on a thin freezing rubber mattress on the floor beside Louise's cot.

That was the heart.

Thursday John rang to see were the brain scan results ready yet. No, they weren't.

Tick...Tock...Tick...Tock...

Friday...I answered the phone to John's number.

When your husband starts a conversation with 'Now, before I say anything..it's not as bad as it could have been...'

You don't breathe a sigh of relief.

He proceeded to read out what I later learned was half of what was written down.

Rather than try and explain what I don't know myself, here's what it says:

'Blah...Blah...Blah....etc

There is a large extra axial fluid collection within the posterior fossa, predominantly right-sided, which is shown to communicate with an enlarged distorted fourth ventricle.  There appears to be complete agenesis of the cerebellar vermis, with significant hypoplasia of the right cerebellar hemisphere.  The posterior fossa appears slightly enlarged, with a mild elevation of the tentorium.  No supratentorial abnormality is identified.  Findings are consistent with a Dandy-Walker Malformation, which appears unchanged since the previous examination.

Regarding the vascular anatomy, the right cartoid artery is significantly smaller than the left.  The right internal cartoid artery is significantly smaller than the left and the anterior and middle cerebral branches are also smaller.  I do not see convincing continuity between the right posterior communicating artery and the posterior cerebral artery.  (Oh, and great news...)   The vertebral-basilar arteries appear normal.'


The bottom line is we really have no idea what the short or long term significance of this is.  Thanks be to God, and I sincerely believe it is thanks to Him, there are no aneurisyms  present which was our greatest fear. So that's good.  I guess we'll need to see a vascular specialist and a neuro-surgeon as well as the birth-mark department which diagnosed her in the first place to see what the course of action will be.  On a very superficial level (and I can always find something superficial to worry about in the midst of great drama), I hope we don't have to go to a different hospital as I suspect because there is ZERO parking available around the one I think it might be and I can visualise me and Louise taking the bus in the city traffic to her appointments.

I was sitting beside John examining the fax today and commented to him that there was no mention of the rest of the scan, only the brain.

 'Oh, that'll be two more separate reports.  I've ordered them and hopefully they'll be ready on Monday'.

What are they going to show up? I don't know.

For anyone wondering why I've put that whole report in this post and that I should be more...well...private, firstly, a lot of my family and close friends are interested and secondly, I'll be posting this in the PHACE Syndrome group page. This is such a rare condition, every bit of medical information is important and of interest to other families, and I'm also hoping some of them might be able to impart some of their knowledge and experience onto me.  If you have any, please leave it as a comment.  This is new to all of us.

In the meantime, I'm delighted to say Louise as ever is a little rascal.  As I write this she is on the floor with my paper cutter (you can't cut yourself on it :-)) cutting my Christmas card making supplies in half.

Oh, and this week she decided to go from full time nappies to fully daytime trained in one day.  I'm very very proud of my little girl.

And did I mention...we love her to bits. ♥

Finger Painting

How To Keep A Heart Baby Warm At Night ♥

Jennifer xx

A Heartfelt Letter, Thank You

I opened my e-mail on Monday and found this e-mail. It means a lot to me and especially because after he sent it, the writer was filled with doubts and regrets that maybe he shouldn't have sent it, that I'd think him stupid, or weird.  He sent it anyway and I am glad he did. It gave me solace after our visit to the cardiologist and the news that Louise's surgery will be brought much forward. Probably in the new year now instead of this time next year.  

It is never wrong to do a good thing and the best time to do a good thing is when you think of it...wait for later and it won't be done, you can be sure of that. 

With his permission, here it is.  Thank you.

Dear Jennifer, 

I was very touched yesterday (on returning from 2 weeks without email) to read your latest "Little Louise" blog post. Then this morning/ last night (around 6am) I couldn't sleep and felt strongly that I needed to pray for Louise especially, but also for you and John, and for all the children - Rebecca, Miriam, Laura, Isabelle and Peter. Some verses from Psalm 139 (you might know it as 138) came into my mind after praying for you all. 

'If I say "surely the darkness will hide me, and the light become night around me", even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. For you created me in my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you, when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained to me were written in your book before one of them came to be'. 


The other thing that came into my mind after praying for you was a thought that has been important for me for a long time, and particularly at difficult times – that God holds each one of us in the palm of his hand and he has written our names there (this bit, about the names being engraved on God's hand is from Isaiah 49), and I thought it might be helpful for you to remember that God has your name, Jennifer, and John's name, and Rebecca's, Miriam's, Laura's, Isabells's, Peter's and Louise's names engraved on the palm of his hand. 


Bye for now and if you ever have a moment to drop me a line (email or text) to let me know how you're all doing, and how, specifically, I can be praying for you (I'm praying for Louise's heart whenever I remember, of course), I would love it. 
With much love and big (virtual) hugs, 
and brother in Christ, 
 

I Can't Shout This Loud Enough

Today my heart is heavy.  I am sitting here writing this and listening to my little girl who loves life with gusto puffing and panting because she had just joined in the actions of a Wiggles song.  This morning she got out of bed and ran in to hug me and John and as we cuddled her she gradually got her breath back.  For the first time in exactly two years since her Glenn operation we have felt the need to telephone the hospital and the specialist nurse for advice.  If you remember Louise's first emergency operation, her breathing was her body's way of telling us she was struggling.  For two years I have been telling myself that everything's all right. Today I'm not feeling so confident. Today I'm acutely aware that Louise is not a normal child. Today I'm remembering just why I am a member of Heart Baby groups on Facebook. Today I know we have to do it all again, and maybe again...and again.  Yes, today my heart is heavy.

  Because like it or not I'm a CHD Mom.

So what's it like to be a CHD Mom?  Oh it's just fine.  You soon get very accustomed to sweet little blue toes and a navy coloured mouth after a trip to the swimming pool.  Sometimes we explain to people why we're splashing the warm jacuzzi water onto her to heat her up...sometimes we don't bother, let them think we're mollycoddlers.  There's no wheelchair, or a limp, or disfigurement.  There's no behaviour you need to explain away. It's hidden and secret apart from her beautiful white scars. I don't mind her scars, they remind me that she's one of only 15% of children in the world who need heart surgery that ever receive it.  She's not part of the 85% who die, scar-less. Her scars mean she's alive.

But there are little reminders littered along our path.  Every single form she'll ever fill in will involve disclosure.  Every school trip will involve a discussion with her teachers.  Her insurance will cost more than everybody else's.  Children and teenagers with CHD are encouraged to be involved in non-competitive sports.  But this is a very can-do little girl, what if she wants to be competitive and push herself and by doing so push her half heart beyond what it might be able to do.  What club will want her?  What club wants that responsibility?  

And what if she meets a lovely man and walks up the aisle? Will he be like me and adjust his position when she hugs him lest he feels the strange rhythm of her heartbeat?  Will he move his head away from her pillow (like I do) when he hears that not-quite-right whooshing sound amplified in his ear?  What will two pink lines mean to her? The joy of new life will also mean a challenge to her doctors to help her heart beat for two. What if she needs a transplant?  Will someone else die in time to save my daughter? I hope so. 

But those things are for the future.  Medicine never goes backwards, it only goes forward.  We'll go forward too and we'll manage.

For now I'll continue to struggle to shake that I look at her differently. I'll continue to try not feel sad when I see her having fun. I'll try to stop applying love songs to her and shake the guilt that I have 5 other children I love just as much but I don't apply those songs to them. I'll continue to try and see her as a normal child and not her condition.   Maybe that will never happen, she's a package deal.  She's cute and funny and headstrong and cheekily confident.  And she has half a heart with a strange heartbeat, and a brain 'thing' and a face mark and whatever else we find out about her in her upcoming contrast scan.  That's what she is, she was never anything else.  When we chose life, we chose Louise, we chose the package deal.

For better, for worse, in sickness and health...till death do us part.  

John said to me out of the blue a few days ago 'you know, if she dies now...it'll have been worth it' .  That's not his style but maybe he thinks those things too from time to time.  He's her Daddy after all.  Not all doctors become impassive in the face of illness. 

And now I want to tell you why I'm writing this post.

VACCINATIONS

As you know, Louise's heart defect is part of PHACE syndrome, a genetic condition of no known cause.  There was nothing we could have done any differently to prevent it.  There's no guilt attached. There's no we could have...we should have...We didn't cause it.  Thank God. 

A few days ago I read this article.  Don't pass on...click it and read it.  Rubella is on the rise because of lack of adequate take-up of vaccination.  To benefit from herd immunity a population has to have 95% vaccination.  This is not being reached.  The link between MMR and Autism has been debunked again and again.  Every international paediatric organisation in the world has debunked it,(read that link too) the doctor who came up with this link has had his medical licence removed in UK and America.  He was listed as the worst physician in Medscape and is considered to have done untold and lasting damage to disease control worldwide.

And yet the power of rumour continues to hold people in it's grip of fear.  

But PLEASE note:

RUBELLA CAUSES HEART DEFECTS!!!!!

Nothing we could have done could have prevented Louise's CHD.  

Something YOU don't do today can cause it in your grandchild.

Now imagine your daughter is not vaccinated and she is not adequately protected by herd immunity.  She catches rubella in early pregnancy Her baby...your precious grandchild has a 90% chance of birth defect...blindness, brain damage CHD.  I'm sorry to say but it will be your fault for heading rumour and hearsay rather than extensive medical and scientific evidence.  It'll be your fault for listening to a proved fraudster over people who have genuine concern for people's health.  Do you think your daughter will look you in the eye when she has just handed over her tiny baby to a surgeon like I had to...it is the hardest thing to do...and thank you for your wisdom? How will you feel visiting a baby wired up to every machine you can imagine and whose life and future are uncertain and in the lifetime hands of doctors and know YOU could have prevented it?

I don't feel guilty about Louise. 

I feel sad about her.

Please don't put this on the plate of a baby.  

A Is For Apple..Ap..Ap..Apple.

I just thought I'd upload this cute little clip of Louise doing the alphabet along with a YouTube site.  Considering that speech is one of the things often affected by Dandy-Walker, this might give parents of recently diagnosed children some hope that lots of children with this condition do well and defy predictions in so many areas.

The one thing I have learned about babies with DW is that NEVER is a word which should NEVER be listened to.  The human spirit, the power of love and the real power of heartfelt prayer is something that just cannot be measured on an ultrasound machine.

Love Songs For Louise ♥

This week Hallie Lord is hosting the lovely idea of a Love Song Link-Up over at her super blog Betty Beguiles. I'm running a bit late with it as it's been going for a few days now...pop over there and check out the romance fest in the other blogs.  I've been listening to some of the love songs, a lot of which are new to me and I can't wait to check out more later. Even nicer because my Wedding Anniversary is today!!

The love songs that mean the world to me are not about John.  They are not about him, they are about someone else who slipped into our lives in secret.  They are not about him but they are about the times when I have felt closest to him and when I realised just how great a treasure I have found in him.  Marriage has lots of moments of intimacy, both personal and physical which are for that couple, not to be shared but to be treasured privately.  There are other moments which can do good, maybe even great good by being told. These moments of intimacy I have already shared here.

 I can quite honestly say that I have never felt so close and bonded to my husband as when sitting in a darkened room peering at an ultrasound screen, looking for signs of hope.  I have never felt so close to him as walking beside him out of an operating theatre having just handed over a very unwell two week old.  Or the time when a doctor told us she wouldn't be considered for a donor heart and John said she could have his, and I knew he meant it. 

The songs I've chosen aren't about John but he is the one who carried us all through to the backtrack of these beautiful songs...each of which I applied at different times and usually with tears to our little girl Louise.

So...Beautiful Louise: These are my songs for you.

We had just holidayed in France.  I felt like a cloud was hanging over me that holiday, I just didn't feel right. When Louise was diagnosed with problems I figured that's what it had been...the marking point of the end of life as I'd known it.  That was until John reminded me that God doesn't send 'omens' of a little child who needs our help and don't be so superstitious. (You can see how he makes up the difference of all I'm not lol) I didn't know until the last day that I was brewing Swine Flu-John's first case in the epidemic which followed.  Unknownst to us, Louise came home from that holiday with us...an answer to her siblings earnest (and secret) prayers. 

We hadn't thought another little child would ever join our family and make it and those first few months were filled with the fear of another loss...





We were given a guarded prognosis...which means...prepare for anything...even death..





Long before she was born...it would have taken a lot more than wild horses to drag us away...this song played across the airways that Christmas...






This song came on the radio when we were driving home during her first operation at 2 weeks old...a message to her surgeons, Baby, she's adorable...handle her with care...






The only time I ever asked 'Why Me?' My lowest moment...I posted this song on Facebook that afternoon.

'If I had words to make a day for you...I would make this day last for all time...'






It was only in retrospect that I saw that what had just happened to us was a great gift...





So, Louise, we love you.  You'll never walk alone, we're here and we're here to stay...





And this one because our great gift has brought us so much joy...

Fontan Operation Minute By Minute

This is the operation Louise will be having done next summer. The little girl, Emily, is the age Louise will be and has already had the same two cardiac surgeries as Louise.  I'm not 100% sure whether it was the wisest thing I've ever done to look at this.  On the other hand, these pictures are testimony to just how skilled and utterly amazing these doctors are.  We are so blessed to be able to access these skills for Louise. This operation took place only yesterday so send some prayers Brave Little Emily's way.

Click here to go to the Blog page of Arnold Palmer Hospital to see the minute by minute photographs of Emily's surgery. WARNING...if you are squeamish, maybe not, the images are quite graphic, but AMAZING!!!

Meeting The Wiggles-More Than They Are.

I have loved The Wiggles for many years, ever since our eldest two children, now 16 and 14, were tots.  They were always the one children's programme, apart from the Canadian programme, Elephant Show, which didn't make me want to take a rocket launcher to the television.  Four (quite handsome) guys who were real musicians, didn't try and act like children or talk in some sort of artificial way to them.  Any children on their shows looked and acted like real children and not like over-performing stage school clones.  The music was catchy and pleasing to the ear.  Did I mention they were quite handsome?? Oh yes, I mentioned that...

I've always been a bit of a recreational crier.(You know the sort of thing...movies, songs..anything else you can think of...though real tears are not unknown to me either, as this blog can testify to).  Probably more so since I've had little people passing through my life to the strains of Rock-A-Bye-Your-Bear, like the transient little boy in Puff The Magic Dragon.  The days blend into weeks, into months, into years...
Dragons live forever...but not so little boys...or little girls...(I'm making myself cry here) and next thing you have a bunch of mini-adults occupying the beds you used to visit at night to tuck in cute little toes.  The amateur adults are precious too and we love them.  But they're not that interested in choosing a Wiggles DVD to put on to watch.

By the time Louise came along, Peter was six and all the Wiggles VCR tapes had been tucked away to the back of the cupboard.  I hadn't passed them onto the charity shop along with most of the other tapes as they were categorised as sentimental value. We had seen them in concert when Peter was three only to discover to my dismay that velvet-voiced Greg had had to retire due to illness.  Much to John's amusement I spent the whole next day in tears watching YouTube tributes to The Yellow Wiggle! You see they were the soundtrack of my babies childhood.

In the meantime, I had also learned the piano because the instrumental piece 'Music Box Dancer' came on the radio one day.  It's the piece Dorothy (the dinosaur) does her ballet to and I'd never known the name of the music.  Looking it up (tearfully pondering the breakneck speed of the baby years) on YouTube I stumbled on Web Piano Teacher which demonstrated a completely new method of teaching piano to adults who cannot read music.  One of my greatest regrets had always been my inability to even play chopsticks.  A few months later I had Music Box Dancer, Chariots of Fire, Fur Elise, Lean on Me and a few other pieces under my belt.

So one winter's evening some years later, in order to settle a fractious a little toddler girl,  I rummaged to the back of the cupboard and found a video which was still playable on our barely functioning video machine. Louise, who had never been much enamoured by television at all, was immediately enchanted.  Peeping into the room later on I spotted SIX children glued to the TV, and Dad standing in the doorway, also enjoying the music...The Wiggles were back in the family!!

I sent off for replacement DVDs and a few we didn't have already, carefully choosing only the Greg ones. It just didn't seem right to cast him off.

This spring when I spotted that The Wiggles were coming to Ireland and that GREG was back, there was no question of not bringing Louise.  For good measure I got tickets for all the family, figuring that they all clearly love them and could use Louise as cover.  I was looking at their website reading about Greg's return when I had the  notion of sending  them a daring little request...a shot in the dark so to speak...

I sent this e-mail:

 I am just sticking my neck out to enquire whether there would be ANY possibility of a very special little girl who will be 2 1/2 when we bring her to the concert in June (along with her 5 siblings who will be using her as an excuse to go) to even have a brief meeting with The Wiggles. Before Louise was born we were told she may not live as she basically has half a functioning heart and she has had two major cardiac surgeries so far with another one due next year. We were also told that should she live she would be unable to walk or talk and probably also have learning and feeding difficulties. She has defied all predictions and in spite of a rare brain malformation (Dandy-Walker) she is like any typical child (from the outside).  Her little half heart is more loving and joyful than many of those of us who have it all going for us. 


Anyway, even though she is so young, I think it would be difficult to find a child in Ireland more dedicated to The Wiggles. I originally showed her our old VHS tapes which I had bought for her oldest sisters now 15 & 14 and she was immediately smitten. When she wakes during the night it's Dooorrateeee we hear her calling for. The girls have taught her all the dances and they are doing her a world of good. I would be forever grateful if a little meeting could be arranged. However I am aware that you probably get lots of requests like this and will fully understand if it would not be possible. Would it make a difference if I told you that Louise's Mommy (Me) spent an entire day in tears when Greg retired, much to my husband's amusement! (it was because you were such a big part of my children's childhoods) Well I hope you at least consider my request, Louise will win your heart if you meet her. 

Affectionately,

 Jennifer Kehoe.

Months went by and I figured my e-mail had been just one of the hundreds they receive every day.
Then out of the blue this appeared in my inbox:

Hin Jennifer

Thanks for your email. Sounds like Louise is a little battler as they would say in Australia. We are so glad of the positive impact we are are having in your life. We are happy to add you to the meet and greet.

How many tickets did you get?

Confirming you have tickets for the Saturday 2nd June 11am?

Let me know and I will send a voucher so you can attend the meet and greet.

Cheers 

So today, after all these years, this happened:

I think my face just about says it all.

Murray, Greg and Jeff are retiring from The Wiggles at the end of this year. This is their farewell tour.  There were tears in my eyes as they waved goodbye.  Goodbye Wiggles.  Goodbye little babies from my family.  Thank you for meeting us.  Thank you for the happiness you have brought our home.  Thank you for being more than you are.  

Goodbye, Good Luck, God Bless.

Please Share This Far & Wide

This is a beautiful composite movie of a number of children with Dandy-Walker Syndrome.  It demonstrates just how special and precious each one is.  Practically nobody knows what Dandy-Walker is until they receive a diagnosis for their child and are faced with the unknown.  The more the faces of Dandy Walker are made visible, the more babies will be given the chance to show the world just how special they are and how much they can offer this world.  Louise has added to our lives more than ever could be described or imagined and we would not change a single cell of her body if we were given a chance. (though we would probably fix her heart...we are depending on the amazing doctors and scientists of this world to do that.) Please feel free to share this video and to tell Louise's story to anybody who is willing and who has ears to hear.

Leinster Leader Article

The regional newspaper The Leinster Leader did a short piece this week about Louise and our fundraising effort for Babyheart.org It's not available on the website yet but here's a scanned in version:

Please message me on the listed mobile number (or leave a message here) if you would like to know how you can donate.  I am hoping we will be able to raise enough to cover the surgery for one child in the Developing World.  Of course, more than that would be greatly welcome.

Jennifer xx

Planning Lifelong Care

Here's an interesting video I came across on YouTube.  It hits home that it's not necessarily going to be all plain sailing for the future.  Thank God for doctors and scientists like these guys and a little reminder to pray for (and fund) them.

I love what he calls people like Louise who have single ventricle circulation:

"These very special human beings...who have...really never walked the face of the earth before..."

I agree with him-very, very special.

In the meantime, we're still waiting for a date for Louise's MRA.

Shoot Those Tiny Arrows

January 23rd 2012

Today we had Louise's regular cardiac check-up.  John came along with me because I wanted him to be there as we needed to try and pin down a definite plan for having Louise's brain MRA done which would include the heart MRI.

The doctor was very pleased with Louise's colour and demeanour and said she was looking super!  We  got her ready for her ECHO and much to Louise's chagrin he put a big dollop of the gel onto her chest-gone are the days when she used to gurgle up at him with all the charm she could muster.  Well he is pleased with how things are looking. There's a little bit of backflow ( into some vessel, I'll check with John later) but he's not too worried about that, she might grow out of it.  He showed us her fabulous left ventricle and then her tiny little right ventricle, barely there now.  He ased about breathlessness and what makes her blue (really only swimming and cold) and said that was expected, as after all...and the first time I ever heard him using this phrase...she only has half a heart.

And then he shot an arrow through MY heart..."Well, we'll plan her surgery for Summer next year" 

(!!!!!!!!)What!!! Sorry,  my plan was that that was her finished with surgery!!!

Well, it seems not, it's my own fault as he told me not to build up my hopes and of course I did.

Anyway, we then discussed her heart MRI and brain MRA and he said he'd do the heart when she's 15 kilos (she's 11 kg now) which will probably be around next Christmas.  He said she'll always be slow to gain weight, she's a lean baby.  Then schedule her surgery, providing she meets criteria..adequate pulmonary artery growth, lung capacity etc.  What about her MRA..well he said go ahead and organise it separately as he will want a neck line put in under general anaesthetic to measure pressure  and it wouldn't be a good idea to be doing any other procedures at the same time.  That suits us fine as now John can full steam ahead to organise that.

So now instead of one more day under oral sedation, we are now looking at two procedures under general anaesthetic and major surgery next year.

I am gutted.

That said, John is happy about it as his preference is that Louise will have the gold standard circulation that is best for her, and it would be terrible if they postponed it only for her to have it done when she was a teenager or older with all the psychological factors that would kick in by then.

I know he's right but I am just dreading living through all that again, I had put it behind me (sort of).

God will equip us I know.

So it's looking like this blog will be waking up from it's dormant state.

Here's the medical explanation of her operation.

Keep praying for us,

Jennifer (& Louise) xx

Raindrops On My Head

This is a quick little post to announce my new blog. Even though this blog cost me many many tears, I really enjoyed writing it . I considered gradually introducing other topics apart from Louise, as you can see from the last post, but it really is a single issue blog and it deserves to be kept that way. I will continue to chronicle my beautiful Louise's progress here. For example I still have to tell you about her successful hand operation and her upcoming MRA.

My new blog is called 'Raindrops On My Head' after the song I used to sing as a little girl and which caused me much distress as I had no idea how to end it and so was stuck on repeat each time until one of my parents would come to my rescue. Well hopefully I won't be repeating myself too much but I hope people enjoy it and maybe subscribe to it. Like my original aspiration for this blog, which is so close to my heart, I really hope my readers will benefit from what I have to say.

The link is in the blogroll at the side, but here it is as well

Raindrops On My Head

The Moon, The Stars And A Planet Made of Diamond.

September 3rd 2011

When I was a little girl most people didn't have telephones in their house and we certainly didn't. So there were telephone boxes dotted in convenient locations and that's where people went to ring their relatives, friends and the odd sneaky call to a boyfriend armed with a handful of coins. The box near my house was where you'd go and sit on the wall to wait for whoever was in there to either finish talking or run out of money and hope the person was calling long distance as a local call had no time limit. My mother used to telephone her sisters in Scotland and Northern Ireland from there and the calls were quite expensive (and the telephone box freezing in Winter). Co-coincidentally, that wall beside the telephone box is where John and I spent many many hours sitting chatting when we were dating as it was half way between our two houses and is where the foundations of our marriage were dug. The box is gone now but there are many memories a lot of people hold in which it features...good news, bad news, giggling teenage chatter and old friends passing time together...a lot of memories.

(This isn t the actual box)

Well anyway, long distance telephone calls were expensive and inconvenient and Ireland being Ir

eland a lot of people had to save up for calls to sons and daughters or other relatives in UK, America or Australia so conversations were the occasional treat and people would generally make notes to keep the conversation on track and not waste a moment on idle chatter.

Every now and again the charging mechanism on the telephone became faulty and wasn't able to detect whether the correct money or indeed any money at all had been inserted and so calls could be made free of charge. (technically this wasn't stealing as a telephone engineer once told me that the process of telephone calls doesn't actually cost anyone anything so what you're paying for is the service and the maintenance of the lines which is fair enough) Anyway, when this happened it would usually take a day or two for the P&T to realise the fault and would quickly fix it. It was almost always the children who would make this great discovery and would quickly and enthusiastically spread the word and so parents were able to have long relaxed conversations with their absent children, little boys rang NASA and little girls rang Disney, Florida.

 It was great and everybody benefited thanks to the children who discovered this treasure and didn't keep it to themselves.

I use this story a lot to illustrate why people who discover something really great and know it will benefit someone else commit an injustice to keep it to themselves, especially when YOU know it because somebody else has told YOU.

And this is why if you know me a wet weekend you will know that I believe in God. And it is why I am quite happy to pass on what I know because I remember that broken telephone box. Belief means to hold AS TRUE. If something is true, you should pass it on.

So what I'm trying to say is I believe in God and I think He LIKES us.

Imagine a loving parent who delights in their child. That Mummy or Daddy gets real pleasure in seeing their child happy and secure and loved. A few days ago I saw a post online offering free printable little notes for leaving in a child's lunchbox in this back to school week. I thought that was a lovely idea though I'm not sure if my older children would appreciate it unless I tucked them somewhere where their friends definitely wouldn't see them :-)

Any parent who loves their child will sometimes leave a little surprise of something beautiful for no other reason than to show how much that child means to you or to remind him or her that you're thinking of them.

There are numerous children's books with the theme of the parent and child relating to each other the immeasurable extent of their love for each other, each trying to outdo the other in their 'I love you this much and that much...'

Quite often the story leads to I love you as much as the Moon and the Stars...

But lets have a look at what the moon and the stars actually are...the moon as far as astronomers know is a lump of rock and the stars are made out of recycled material which is burned as gas and in fact oftentimes by the time the beauty of the star reaches our eyes it is long burnt out and actually no longer exists. So I love you as much as the Moon and the Stars maybe doesn't quite say it.

So our loving Father God delights in His children and like any loving Father He wants to leave a little surprise to illustrate how much we mean to Him and that He's thinking of us.

 But what to leave? What to leave? Think, think...

Last week astronomers announced to the world that they have discovered a planet made out of DIAMOND!!

So this is what I think...God has just upped the stakes...To Him we are not just worth the Moon and the Stars...we are worth the Moon, the Stars and a Planet Made Of Diamond!! Now beat that!!

 (and maybe just maybe He broke the telephone box as a little treat for His children too? Just saying...)

Put Your Money Where Your Feet Are...

August 29th 2011

When Louise was 10 days old she went into heart failure, that is, she started dying. By having been blessed to have been born into the First World, she was admitted immediately to hospital and operated on a few days later. If she had been born into the Developing World I would now be placing flowers on a small grave instead of making funny Facebook photo albums chronicling her misdemeanours. 

Instead of being admitted into a world class cardiac unit, she may have been brought to a facility bereft of supplies, personnel or facilities for her surgery and would have died of heart failure shortly afterwards. This world isn’t fair and probably never will be but each person can only do what they can do. I can’t become a billionaire benefactor to all these children, I can’t donate my medical expertise because I don’t have any, but I do have two legs and though I cannot at this moment run 10 kilometres, if I start now, I will be able to by next year.

There is an international organisation based in America International Children's Heart Foundation (www.babyheart.org) who bring doctors, surgeons, equipment and everything else required on missions to developing countries and perform life-saving heart surgery on children who would otherwise die. In the process they also provide training for doctors in these countries to leave a legacy where less and less of these precious children will die and hopefully they will go on to leave a trail of mischief in their wake just like my beautiful Louise. All of the doctors do this completely free of charge, often during their only holiday.

I am going to do the mini-marathon for them next year and I really hope to raise as much money as is humanly possible. While fundraising I will hopefully be able to raise awareness of Dandy-Walker Malformation and PHACE Syndrome as I intend in using my very talkative personality to grab every opportunity to talk about it as I can.

So I’m warning my family and friends…start saving now. I will be looking for LARGE donations. Nobody ever knows what is around the next corner and everyone reading this well knows, if it’s illness, you are among the world’s privileged minority.

Thank You,

Jennifer xx

Well, According To My Research...

August 24th 2011

Yesterday afternoon we had Louise's appointment in the National Centre For Medical Genetics which is based in Our Lady's hospital, Crumlin (imagine,all these things that are going on in the country that you never know about, interesting.) I didn't really know what to expect and just guessed it'd be a matter of taking our bloods and some talking. My guess was pretty accurate apart from the bloods. We met with the Professor of Genetics who had already seen Louise when she was in hospital immediately after she was born and another doctor.

He really just discussed what we already knew about PHACE Syndrome and said that they don't know whether there will be any extra implications for Louise in the future as PHACE is very rare and was only named in 1996 so there have been no long term studies to date which is why they are very interested in following up every case like Louise.

He said that although PHACE seems to be genetic, so far there is no evidence that it's hereditary so there's no need for any of the other children, or indeed Louise, to worry when they are having children that this could happen again. There was no need to take any more bloods from her as they already have her DNA, genetic and chromosomal reads from her cord blood which was collected at birth. Incidentally he said all her results so far have been normal, which is good. As we know, finding a gene when you have no idea what you're looking for is like trying to find someone in Tokyo when you don't know what they look like, what their name is, where they live or where they work.

So they'll hold onto the DNA and hopefully it will produce with some medically useful gems, maybe she might even get a gene named after her...'Beautiful Louise Gene' sounds good. Wouldn't it be nice if parents could be told their child has 'Beautiful Louise Syndrome', or 'Very Very Special Caleb Syndrome' or 'Best Little Girl Gracie Syndrome' instead of scary sounding things like '5-ALA dehydratase-deficient porphyria' or 'B variant of the Hexosaminidase GM2 gangliosidosis'
Well I think so anyway.

As regards bringing forward Louise's MRA, I don't think it's a runner. He said it's not his decision to make but he doesn't think they'll do that. The reason for this is an MRI or MRA for a child is not like for you or me being told to stay still for the duration of the scan, it involves a general anesthetic which of course has risks involved, so they wouldn't give a child one just to get information if they weren't going to act on that information. He said that because Louise is well and not having any neurological problems so far there's no way they'd start going in to surgically cauterise or drain any dilations for fear of actually disturbing her status quo, rather they'd just monitor her and her aspirin is protective anyway. They would only do surgery to relieve a problem and he has seen children with PHACE who are very neurologically unwell which doesn't apply to Louise. I suppose it's what I wanted to hear and it's not what I wanted to hear. Anyway, they are the doctors, I'm not, and I know one thing for sure, EVERY single doctor she's seen since she was born has her best interests at heart.

(actually now that I'm writing this, I'm thinking there's ONE doctor who was involved in my pregnancy who I'm going to write to tonight to thank her for being such a comfort in the midst of so much darkness, she was a Fellow of Fetal Medicine and she used to take me aside at the end of the visits and say things like 'it's sooo exciting, she's going to be a beautiful baby girl' and 'she'll look just like the other children, they'll LOVE her' I wonder how many lives she has saved just by saying that sort of thing?)

So that was more or less the genetic visit, he just photographed her face marks and asked us then for permission to hold onto her DNA for research and would we mind if they called on us for students etc to study her case. I refused. Ah no, that's a joke, of course I agreed (in fact I'd be a bit chuffed to tell the truth)

Well, one thing I'm learning as we go on...in some ways Louise was unlucky to have pulled the short straw, but in so many ways she is so very lucky in that she could have been so much worse.

Thank You, Thank You, Thank You God.

Louise Gardening In Scotland

I Love Ireland...Then Again, I Love Scotland Too..

Something I Want To Say

August 22nd 2011

Today I read a post on a Dandy-Walker forum by a sibling of a young man who lives with Dandy-Walker asking parents to consider abortion more seriously as the way to go after getting an in-utero diagnosis. She defended the position that practically all doctors push for termination as the preferable option.( I have yet to come across a DW family who were encouraged to welcome the baby by an obstetrician) Her reason for this request is that she wishes her mother had aborted her brother because then HER life would be better.

This shocking post set me thinking and I have been mulling over it all afternoon, so here are my thoughts, some of which I posted on the forum.

The day we heard about Louise's problems we were broken hearted. The option was immediately presented to us that many people would 'go to England'. Several times during my pregnancy I was asked by friends 'did I have to have a termination?' Our Obstetric visits were like a psychological warfare as to who was going to win out...Louise in this instance was lucky that there was NO chink in her parents united armour but I can clearly see how a frightened, terrified mother could easily be pressured or bullied into making that irreversible decision.

On the journey home the first day I said to John that I hoped the baby would die quickly rather than in my arms after birth because although it would rip my heart in two, it would be a miscarriage and I knew I could cope with that, having lived through it so many times before.

A few days later I told John I didn't want her to die quickly, I wanted her to get to the age she's be considered a stillbirth so that she'd at least have a birth certificate and thus be recognised by the state as having passed through.

A few days later I told John I DIDN'T WANT HER TO DIE UNDER ANY CIRCUMSTANCE!!!!!

So it took me those good few days to work through my emotions. Even though abortion was never for a split second on the cards, my initial emotional wish to get the problem over with in the easiest way. It took those few days of tears, prayer, talking etc for the maternal desire to fight at all cost to myself for my little child who was in trouble to really kick in. Had I not been steadfast in my position that life is not ours to take away, Louise would have been 'terminated' before I had a chance to reach the third and most overwhelming position.

Researching DW online I came across a medical paper which indicated that 92% of babies like Louise are aborted and we are all fully aware of the rapidly decreasing numbers of babies with Down's Syndrome being born with a lot of western countries having a routine seek and find screening programme to ensure as few as possible slip through.

So this is what I wrote in reply to that loving older sister's long post:

The first rule of medicine is 'Do No Harm' I can think of no greater harm than to deliberately take the life of an innocent child who has done no wrong other than to fail to reach the standard of perfection deemed necessary by our western medical system and by the eugenic attitude that has seeped into and become entrenched in our culture. Whose decision is it to determine whose lives are worth living and whose are not?

I sat beside an overseas obstetrician at a medical dinner one Christmas and he was boasting to me (18 days pre delivery) how pre-natal testing is helping reduce the cases of Down's Syndrome. I asked him were they curing Downs then ? (knowing of course that they weren't) 'Oh no, they can be terminated...'
I replied that they could eradicate every known illness in that way. By killing every blind person, is blindness then cured? Of course not, you just have a lot of dead people and a lot of doctors who have done something which has no place in medicine.

Quality of life is not for us to determine, when I was pregnant with my baby who has DW 'quality of life' was all we heard about. The doctor gave the worst scenario, presented in a very brutal, un-compassionate and unkind way. She gave the worst scenario, but failed to present the equally possible best scenario that these babies can do amazingly well, that the love they carry along with them will blow you away, that they will cause a ripple impact of immeasurable good across the world - something very few of us can claim to have achieved with our eugenically acceptable lives, least of all doctors who march these precious babies off to have their quality of life removed from them, sometimes within hours of diagnosis. One couple I know were even offered an abortion in the Ultrasound room (which I'm guessing is illegal in any country) and were pressured to the point that the Dad placed a formal complaint with the hospital.

So some people by their disability cause others to have more difficult lives, to be tied down, to have siblings who have to learn to wait or put themselves out, but if to kill them is ok for that reason, why not kill the teenager who breaks their parents heart by drinking, drugs, cheek etc? Why not kill the person who has had a car crash and is left disabled? Or the girl I know who woke up beside her young husband one morning to find he had a stroke and her life now entails fulfilling her vow of 'in sickness or in health' ? should he be killed because he's making someone's life inconvenient? Of course not!!!

Human life has an innate dignity simply because it is human life, it's dignity and value are not dependent on cognition, ability or 'quality'. A eldest daughter in large family I know has profound physical and mental disability. The family care for her at home and by outside standards her quality of life is poor, however, her loving family can read her and her enjoyment of their interactions with her. People who call to the house first make a bee-line for her because she enriches them just by being who she is.

Finally, I'll point to where the attitude of aborting children because of quality of life leads to : In Brazil, when the body of 9-year-old Patricio Hilario da Silva was found on a main street in Ipanema in 1989, there was a handwritten note tied around his neck.

"I killed you because you didn't study and had no future," the note read. "The government must not allow the streets of the city to be invaded by kids."

There is no difference. Abortion has no place in medicine, it is not medicine and ultimitely no good can come out of it.

My Beautiful Louise Who Had No Other Advocate Except Her Mummy and Daddy