Friday, 24 October 2014

A Heart Charity is not Newsworthy

I've sat in a Hospital cubicle stroking my tiny daughters hands while the parents next door (separated by a thin curtain) were told there was nothing further that could be done to save their daughter; I've felt my legs give way beneath me and my blood curdle as I heard their terrifying sobs escape their bodies uncontrollably. I've hugged parents and struggled to find the words to say when they return to the parents room after spending the afternoon with their son for the final time before letting him slip away peacefully.

The world isn't an innocent and wonderful place to me anymore; I've seen so much suffering (by brave children and their amazing parents). I've also had to watch my own daughter suffer because in some cruel way - it's the decision we made because we love her and weren't ready to give up on her.

I was tweeted by a fellow Heart Mum asking for my thoughts and feelings on the fact that a Charity providing support for Heart Families and children with feeding issues was told by a Newspaper that they weren't newsworthy as they aren't a cancer charity.

Now I'm not going to be disrespectful to any charity; any charity who funds research and supports families with any medical needs deserves all the funding and publicity available.

How can any publication deem any Charity to be not "Newsworthy"??? 

The facts are quite scary; of every 100 babies born today - 1 of them with be born with a Congenital Heart Defect. 

CHD's kill more children than all Childhood Cancers combined.

My Brother suffers from Hypertrophic Cardiomyopathy (like Fabrice Muamba) Wolff Parkinsons White, Aortic Stenosis, Bicuspid Valve (we all should have a Tricuspid valve) and Moderate to Severe valve regurgitation.

Wednesday, 22 October 2014

A letter from London

Tonight we are finally back online; the telephone pole outside our house was hit by lightning almost 2 weeks ago which fried our Router and our ADSL filter - it's taken until today to get someone out here. There are a couple of posts I've been meaning to publish but as I always email photos from my camera to myself - I couldn't do that without out WiFi.

So our last trip to Great Ormond Street Hospital was on the 11th of September, it was Dr Ian Sullivan himself who we saw this time. I've got to say though; although we owe Martha's life to him - I don't like seeing him in the Cardiology Clinic. It might sound completely crazy but he is so "proper" that he isn't enthusiastic enough for me compared to Georgi who we saw last time (you can read the post from our June visit to London here)

While we were offline our review letter arrived so I thought I'd share this one like I did the last time. I'm sorry if you think this is inappropriate but please respect that I do this to support parents who are desperate for any kind of information to help them prepare for their child's treatment.

So the letter starts;

RE: Martha Redfern-Murphy

Diagnoses:
1. Prenatal diagnosis interruption of aortic arch distal to left carotid artery, large malaligned outlet muscular VSD, subaortic stenosis.
2. Aortic arch repair with left subclavian flap and pulmonary homograft reconstruction, and banding of pulmonary trunk August 2013.
3. Patch closure of VSD, de-banding of pulmonary artery, and resection of left ventricular outflow tract obstruction, 14th November 2013.
4. Intention of epicardial dual chamber pacemaker, 25th November 2013 (bipolar atrial and ventricular pacing leads attached to left atrium and posterior wall of left ventricle via left thoracotomy, connected to generator in suprarenal pocket).
5. Closure of residual VSD, direct closure of patent form and ovale, relief of supravalvar aortic stenosis with patch augmentation, 12th December 2013.

I was please to see Martha, and especially to see her looking so well. She rolls and commando crawls but is not yet standing. She looked well (7.5Kg, 71.2cm). The femoral pulses were easily palpable. The cardiac impulse was not overactive. I could not feel a suprasternal thrill. There was an ejection systolic murmur at the left sternal edge.

ECHO showed satisfactory biventricular function. There was a synchronous contraction of septum and left ventricular posterior wall (LVIDD 27mm, fractional shortening 26%). There was mild symmetrical left ventricular hypertrophy. There was subaortic narrowing, with flow acceleration up to peak velocity 3.7 m/sec. The aortic valve function was good. There was good relief of the previous supravalvar aortic stenosis. Widely patent aortic arch. No residual VSD was seen. Physiological tricuspid regurgitation had peak velocity that was not more than 3 m/sec. Flow in the reconstructed pulmonary artery was not obstructed.

Progress is satisfactory. I suggested she could discontinue Furosemide and Amiloride, and wean off Amiodarone over the next month, which would leave her on no drug treatment. ECG monitoring for 24 hours after her last visit showed either sinus rhythm or atrial paced rhythm throughout with no suggestion of tachycardia. We arranged elective cardiology review and pacing check in six months which the family prefer to continue here despite the distance involved.

***

Although we are happy with the contents of the letter, the tone is completely different to Georgi's letter in June. But if I could go back in time to December 2013 and show myself this letter - I'd be dancing around her bedspace, deliriously happy for sure.

Martha was weighed yesterday and is now 8.06Kg which takes her to 17lbs 13oz - amazing considering when she can home last September she was a tiny 5lbs 13oz.

Here are some photos I've taken of her recently.

GM
x







The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx

Thursday, 9 October 2014

A family update

A couple of weeks have passed since I published my last blog post; at that point both girls had a cold and I hadn't taken them to the Doctors yet.



But the following morning I realised that I should play it safe especially with Martha Grace - a simple cold for most kids could brew in to a full on respiratory infection for Heart Babies/

Wednesday, 24 September 2014

Girls got a cold



The lurgi has arrived in our house; Isabella started sneezing over the weekend and by Monday morning she had a full on mucus cough (sorry for the TMI), I knew it was only a matter of time before Martha caught it - and I was right. She was absolutely fine when I put her down for her nap on Monday afternoon but as soon as she woke up I knew she'd caught the cold as she had a runny nose. Since then she's had the same cough as Isabella.

I haven't taken her to the Doctors (cue the gasps of horror) as Martha is absolutely fine in herself, she isn't cranky or off her bottles or food. She's been crawling and rolling around the living room, sticking to her normal nap times and bed times. Our Surgery operates a walk-in system so I know if I suddenly think she needs to be seen then I only have a two minute drive and I'm there, but for now I'd rather have her home than risk her getting anything worse from sitting in the waiting room. 

Monday, 15 September 2014

London 11.09.2014



I have been wanting to put this post together all weekend, a few of you have messaged to find out everything was OK as I hadn't really updated you all properly (thank you to those who did). But I'd worked a late shift the night before we went to London, we had a nightmare journey home and Mark went away for the weekend - I just haven't gotten around to it until now.

I don't think I will ever stop being nervous before an appointment at Great Ormond Street, regardless of how well Martha looks to us - we never really know what's going on inside

Wednesday, 10 September 2014

That dreaded feeling again



The appointments come around so quickly. It doesn't seem like so long ago when I was dreading her last check-up. Once again the world stops tomorrow - as hard as I've tried I can't see past tomorrow; I can't imagine how my life will look tomorrow night. 

We have been exceptionally lucky; when in the past three weeks two Heart Babies whose stories we've followed have sadly passed away - we still have our Martha Grace...she has just celebrated her 1st Birthday.

We had amazing results at our last appointment and to ask God  for an improvement on that is just plain greedy. So I'm going to pray that there are no changes; that she is neither better nor worse than she was last time, that Great Ormond Street continue to be happy with her progress. Failing that; I would just like that whatever issue we encounter tomorrow - they have a plan for how to make her better.

But Mark has been warned, if we get what we consider to be "good news" tomorrow - then Christmas begins in our house tomorrow night; after the Christmas we had last year we more than deserve it.

She's finally sitting up by herself - unaided, she has been putting weight on nicely and was 16lbs 5oz last week (7.4Kg) and is really enjoying her food. Deep down a little part of me is convinced that she is fine, I know that we would have noticed a change if there was anything major going on...but I know better than to be that complacent.

Please keep her in your thoughts tomorrow.

GM
x



Wednesday, 3 September 2014

Martha Grace's 1st Birthday trip to Chester Zoo

I don't know why it's taken me until now to get this post published, I don't know what I've been doing. I've only just looked through my camera at all the pictures I took and uploaded them to my tablet.

Thank you to everyone who took the time to wish Martha Grace a Happy Birthday - she is so lucky to have you all supporting her.

I feel like I've droned on enough about what a huge milestone the Birthday was for Martha and how it was a day we didn't believe she'd make it to. So here are just a few photo's of her Birthday.

Have a great day everyone.

GM
x