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**If you are a heart parent in need of help, advice or support then please visit and 'contact us' via this website.. http://speciallittlehearts.ning.com/
I dedicate myself into helping others who are facing what we have been through, If you think talking to me can be of any use please do get in touch, would be delighted to help support you.
If you need eMail help: chdsupport@live.co.uk



I have set this page up to raise money for this wonderful cause.
My daughter, Meghan was diagnosed with 'Tetralogy Of Fallot' Monday 22nd December 2008, she is now nearly 6 months old and we are awaiting news of her operation date. Her condition is serious and she requires major open heart sugery for a fully corrective surgery.
I believe that awareness needs to be spread reguarding CHD's, there also should be more routine tests done to aid their diagnosis.

Please give generiously and pray that when she gets her operation date that things go smoothly for us all.

Meghan has two older brothers, Duncan & James, they both adore her.


                     

Sunday 20^th July 2008

Meghan was born in the family home @ 09:48am. This was a planned home birth, the 2^nd successful home birth after previous caesarean section.

Meghan was born after 10 days slow stop – start labour. Friday 18^th July at approximately 3pm the contractions were only 5 minutes apart (This is when you call for the midwife) So I called Dean home, He rushed home, work colleagues wishing him good luck, He arrived home and 20 minutes later they stopped.

After birth the midwife continued to check Meghan over, Temperature, heel prick tests – the usual things really. She then got a stethoscope out and began to listen to her chest, With this her face went to that of one filled with worry. 'She has a heart murmur' she began to say, 'she will need to get it seen to'

At the time I thought, 'well James had one, He grew out of his' Part of me thought maybe she will have a heart murmur etc..

2 Weeks later we went to the local doctor's to get this seen to, Again the doctor listened to her heart and told us, it is serious and she needs to be seen by a professional in the field.

Friday 29^th August 2008

Meghan had an appointment at a small local hospital, Meghan was weighed then seen by a 'specialist'

This lady asked us questions about Meghan 'Does she go blue whilst feeding?' At this point Meghan showed NO SYMPTOMS.

She then listened to Meghan's chest – Again another worried face. Was what they were hearing really that bad?

She then proceeded to tell us 'It's not good, But it's not bad.... Worst case scenario is Surgery'

Being told this, I thought about it, If worst case is surgery – and its not bad – She should be fine!

I'd convinced myself it would possibly mean medication, and life-long monitoring of her murmur.

This appointment would be referred to another specialist, a cardiac consultant.

We would be seen in a matter of week's than months.

Late November 2008

Thought it was strange no one had been in contact about Meghan's heart murmur, I contacted the Doctors who ran a Triage service on the day I called, I explained that we seem to of been 'forgotten' about and could she chase it up – Lovely woman and she did.

Within a week I received a letter for an appointment to see the Cardiac Consultant, Mr Tulloh.

It was nice to have this appointment come through – But at the same time, it was only 3 days before Christmas, Monday 22^nd December 2008.

Monday 22^nd December 2008.

Our world shattered into several thousand pieces.

The "triage" nurse chased it up, and within a week got a hospital appointment for Monday 22nd December.
She would be having an ECG and an ultrasound of her heart.
We went into the outpatient’s children’s ward - and were told to go to a different ward for the ECG to be done. (Echo cardiogram There they put several sticky pads on her, connected the wires and took several print outs of the readings. She is the first baby this consultant's had who didn’t cry when the sticky pads came off!!! (That’s my girl!!)
We then went back to the outpatient’s children’s and waited to be called in by the consultant.
The nurse took Meghan’s weight first.
Then the consultant called us in.
She had some jelly put on her chest, then the ultrasound machine.
For probably 10 minutes the room was dark and we could see her tiny wee heart on the screen, red bits, blue bits then we heard sound then we saw lines of the beating.
Then he had finished, turned the lights on and spoke complete gibberish (well it was then)

"She has a condition, called Tetralogy of Fallot... she will need surgery I'm afraid"
I broke down into a ball of tears, "nooo, not my baby, no please no" This couldn't be right
Dean asked, "Will this be keyhole?"
The consultant, Mr Tulloh who is based at Bristol Children's Hospital. He will look after Meghan through her life replied "noooo"
I had been kicked in the teeth, I looked at her, led on the bed and shook my head, left to right and right to left - My baby Meghan, surgery? Didn’t seem real.

He went on to say that the operation is major open-heart surgery which will last about 5 hours, she will come out straight into intensive care and will need a stay of at least a week in hospital.
It was at this point I was handed tissues (Finally)
He gave us an information leaflet and said, "I am very sorry" before walking out the room.

We left the room devastated; I couldn’t compose myself, walked out into a waiting room full of people (god only knows what they thought, I didn’t care though, I only cared about what my baby girl and the future that awaited her regarding what she would have to go through)
The nurse was as helpful as I don’t know how - the only person EVER in that hospital to give a damn about any of us (Same hospital Duncan was born in) She was really sweet and at the end gave me a hug and a kiss!! (I thought the kiss was a little over the top but I didn’t complain, she felt like what a mum should feel like to me) She re-assured us that, there were people in the waiting room who had the surgery a year ago etc. and are here now, lovely bouncing around etc. it didn't help me not really. With all respect - they are not my children Meghan is - I only care about her. (Maybe selfish to say that really... but its true!)

Meghan is to have monthly flu jabs, to keep her in good health for when we get an appointment - for her operation. She is to have the operation soon, she should of had it now, at 5 months but seen as the NHS ignored us for MONTHS....!!!

Her operation will be carried out in Bristol, In the Bristol Children's Hospital.

We are waiting for her operation date.

Thursday 8th Jan 08

Meghan has been to hospital to have the Synagis injection (helps to stop her getting bronchitis)
Very big needle, lots of tears both from Meghan and Mummy.
She will need this monthly, until March / April.
We have been told that just this dose cost £350 !!! (Thank goodness we haven’t gone private hey!)
Next Synagogal Injection, Thursday 5th Feb & then Thursday 5th March, (Mummies Birthday!)
Her next appointment is Monday 26th Jan, when we will be seeing a specialist & Mummy will be asking lots of very important questions about my operation.

Monday 26th January 2009

Am - Flu Jab
Later Am - Cardiac consultant appointment.

Am: Flu Jab:
This appointment went fine, the doctor gave her the injection and she nearly didn't cry (Brave Little Meghan!!) He then saw me for my Asthma and is starting to 'wean' me off the steroid tablets. I'm apparently to see him in 3 weeks **without fail** lol!!!! (he knows me too well already!!)


Am: Cardiac Consultant:

Meghans hospital appointment went fine-ish. Her sats were at 86% and I knew they should be in the 90's, even the nurse who was doing it said (which made me worry even more..) 'hmmm that's odd, it should be well in the 90's..' (I think she forgot that Meghan has the condition where DE-OXYGENATED blood is passing through her body, when it should be OXYGENATED!!! Meaning, the oxygen in blood levels will be lower, stupid mare lol!!

So then she got the oxometer around her foot. She was weighed and I asked all my questions, I feel a little better in myself but cant wait to see her surgeon and get the real ball rolling!

The cardiac consultant made a few things clear, one of which being she will be under sedation for about 48 hours past op, this meaning we also cant cuddle her (talk about the longest 48 hours i'll live through!!) and a few other questions answered. We can fully wean her as this apparently wont affect her diet much, yipee!!

She will have a drip in after the operation, then they will insert a tube from her nose that goes into her stomach, It's called a NG tube - but she may well come home with this, and we may well have to learn the 'ins and outs' out feeding her via tube.

This is all so frightening, still I keep wishing he'd say - ITS GONE, ITS REALLY GONE. SHES FINE.
But I live in a dream world most of the time.

Wednesday 4th February 2009

We got a call from Mr Parry's Secretary, she said we have a date. My world stopped for a moment, Burst into tears, This really was about to happen to us. She asked if id like her to call back, I said no no its OK !
She said to come to Pre-op clinic tomorrow in Bristol, And not the synagis injection appointment.

My feelings and emotions to get this call, Unbelievable. It was really our time, To get the call was just a relief in the respect: she has an appointment – but at the same time it was terrifying because I was scared of loosing her.

Thursday 5th February 2009.

Firstly, SNOW - Terrible stuff, took 30 minutes + to de-frost the car, finally took the boys to nursery, we were the first to get there (children wise)
Roads, treturious, really scary being on them, especially as 'Gloucestershire are running out of grit' plus there is only so much absorbency of it all anyway!
We took it easy, 30 odd miles an hour and slowing for corners and hills (obviously) on the way there, we saw a car in the ditch, Looked like it had been there all night, a lorry trying to corner round a bollard (LOL) and some idiot in a white shogun overtake us (OMG)!
We got to the motorway and it was all clear, apart from the fast lane, so kept in the left hand lane and put us foot down. Arrived in Bristol, map reading (what a crap map dean has by the way... lol) I was reading of which roads we needed, (Lost sat nav a while ago, oops)
Got a little lost, but finally ended up where it made sense on the map! Apparently one car park is shut for building work, which is making the parking problem a nightmare.
Found Haematology car park (TINY) and waited for a space, I then got out to make sure that space wasn't nicked as dean prepared position for parking. (A Peugeot Of all cars.. lol drove near as I was stood in the space so had I of not got out, he would of stole the parking space!!)
Finally parked, got ticket and headed in.
Walked through Bristol Hospital, out the other end and into Children's hospital.
A lovely lady greeted us, asked us if we knew where we were going, not really was our reply and she gave us directions.
Through we went, said sorry we were 5 ins late (NOT BAD REALLY !!!!!!!) but the parking is a nightmare, had we of been able to park straight away would of been on time !!
Immediately we were called into the ultrasound room.
The lady made Meghan cry (we think Meghan had wind...) But she 'bottom lipped' this woman for ages, lol. Lady was really nice, began to start ultrasound and taking images of Meghan's tiny heart. We saw red bits, blue bits then we heard sound.
Because its a different hospital, they have to repeat the 'full exam' which was taken Monday 22nd December.
Whilst she was doing the ultrasound, the room suddenly went dark, machine off and lights too.
Scared - then suddenly all back on.
The machine we prayed still had all those images, videos and sound recordings of her heart.
The lady who was doing the ultrasound said..'I hope they wasn't in the middle of a case upstairs' I only presume she meant THEATRE.
Worry shot through me, - what if this happened as Meghan is on heart and lung bypass, what if the generator doesn't kick in as it usually does. Worry, Panic, Despair.
Machine came back after a while, saved it all but wouldn't let her continue with the 'exam' so she had to start a new one and continue where she left off.
Second 'exam' she took 49 images.
We took photographs of Meghan having this done.
We told the sonographer about the slide show video I made, and she said surprised you haven brought the camera with you... ha ha - so out it came. Battery in camera fooked - so we used our mobiles!! I told her she spoke to soon lol!!
The sonographer asked where we came from, and we told her - and she said 'well you did well then!'
With that complete we took a seat back in the waiting room.
She then was called in for her ECG. She loves the boys by the way - it seems she doesn't cry around Male staff!!
In we went, stickers on, readings done! Off came the stickers, no tears, not even a 'im going to cry' face!
Then sent down for a chest x-ray, only one parent allowed into this room, Dean went. I saw the red light flash 'DO NOT ENTER' as it was being taken. Meghan had a protective thing put over her legs, and daddy wore a protective jacket.
Back up into the department again, waited a while for; Cardiac Liaison Nurse, Bloods and to see the doctor.
We were then offered a 'ward viewing' of which we went.
We saw the tiny rooms, cots and poorly babies.
My heart broke, knowing that this time next week - she will be still on PICU but nearly on the ward.
We saw the parents room and toy room.
We hope to have a 'family room' of which we will be on our own.
We arrived back in department and finally got called through to see the 'cardiac liaison nurse' who was really nice, asked if we had any questions and took swabs of Meghan's nose and inner thighs. (infection purposes)
She then asked if I was OK to see photographs of babies who have had the operation, and my mind was put at rest with regards how she is 'sent off'
I was so worried that they would hold her and put the anaesthetic into her hand whilst awake, but no, gas and air will send her off and when shes under they will put injections, catheter etc.. in.
I said I was OK to see the photographs and told her I knew she would have tubes coming out of her chest etc.. she said yes that's right - showed us the photograph and I held my mouth, eyes flooding and welling up, she shut the book to - and said 'are you sure your OK' I said yes - I rather try to prepair myself than not have an idea.
We went on, looking at the pics, seeing this little girl, when her mum was cuddling her on day 3, then on the ward etc..
Then we had bloods done, Worst part ever.
Dean held her as they tried from her right hand, crying bless her, screaming, getting into such a state and all I could do to help her was stroke her hand and head.
That vein closed up, so they had to try again, her left hand.
This took ages, they let it drip out into the voiles, they had 5 voiles to fill, I kept thinking, come on how many more Grrr.
She got into such a state, I could only look at her and feel so heart broken, I realised its only going to get worse and I cant help but be there for her, there's nothing I can say or do to help or ease her pain.
Then finally we got to see the doctor - of whom is 31 weeks pregnant !! (what a wonderful lil bump she had !)
She listened to her chest and filled out a form, of which asked about her development etc..
Then we were free to go ! (for today anyway)
Tuesday 3pm - she will be admitted (Baby sitter provided of course, she wont be having it if we cant make arrangements for her bro's)
Wed Am - She's having the surgery.
I am getting so stressed over whos going to have the boys its unreal, absolutely.

5pm - Photographer for the local papers came, took some lovely pictures.

Monday 9th February 2009

Our son's nursery are having a 'wear red week' We went in, took all the heart shaped balloons in, they were on sticks, the children loved them - only downfall was they kept coming off their sticks!
Even staff loved their balloons! (Forgot the stickers though, woops!)
**WE ARE TODAYS GLOUCESTERSHIRE PAPERS, THE GLOUCESTERSHIRE ECHO PAGE 13, THE CITIZEN PAGE 3**

Tuesday 10th & Wednesday 11th February 2009
(( OPERATION DATE!))

**WE ARE IN WEDNESDAYS 'STROUD LIFE' PAGE 9.**

Tuesday 10th February - Wednesday 11th February.

So we went in Tuesday about 4pm, First she had an ultrasound scan, using a few probes.
A woman came into the room and said something about her white blood cell count and infection in her blood or something; all way above my head. They said Mr Parry would probably want repeat bloods doing. She went. Then a man came into the room, somehow I knew who he was, I said 'Mr Parry I presume?' He replied 'yes' with that I shook his hand and said 'nice to meet you finally!'
He looked at the screen, asked the woman to use colour and he said 'yes just there'
Her hole in her heart is huge, he saw all he needed to see right there. He then went and said he'd catch up with us later on.
Cleaned Meghan up and then left the room. Back to her Room... (Room 3)
Then the anaesthetist came in to explain what would happen in the beginning, just before the operation would begin, said she would be gassed to sleep saving her having a needle to do to sleep with. Said that there is so much to do it usually takes an hour after shes put under anaesthetic before the actual operation starts. They need to put the tubes into her nose, One going to her lungs, the other nostril to her stomach for feeds. They will need to put in an arterial line in her neck, as well as intubate her. She asked if we wanted to know anything else, so I asked ' Can we both be there to watch her go under?' Her reply 'Yes, you can hold her like this.. and then once shes under put her onto the bed quickly and you will have to leave quickly' I could manage this; through the tears I pictured it happening, I got ready and mentally prepared for how and when it would happen tomorrow Then Mr Parry came in, and I said 'Hi again' (Dean then thought he'd missed something.. and he did ! As Me and Meghan were in having the ultrasound Dean was busy bringing in the overnight bags..) Anyway Mr Parry gave us 5 major operation complications; along with those were Bleeding, Infection and May need a pacemaker fitted. After the operation she will be fitted to an external pacemaker which kicks in automatically if and when her heart skips a beat; should this happen she may need a further surgery and a pacemaker fitted. He then said 'I will do my very best for your daughter' This all made me worry so much. Then he requested she had repeat bloods done :-( Then we went in to the treatment room with a nurse and doctor, who took bloods through last weeks bruises (Pre-Op Clinic)


Her hands bruised. Yet she can still smile for us afterwards; Meghan is magical.
At about 7pm, we were asked if we had visited PICU, our reply was 'No, but we wanted to!' A nurse said 'OK ill take you, are you bringing Meghan?'
I said 'No, I don't want her to see me crying or be scared at the bleeping' so the nurse took her with her in her pushchair !! (They also Commented on how lush her loola is... !! hehe !!
We Saw PICU, So so scared, tears filling my eyes, seeing all these little bodies and thinking, this will be her this time tomorrow! All these machines beeping, all these nurses.
Whilst Meghan is down there its one nurse per patient.
Sympathy running through me; what are we about to put our princess through, then remembering we have no choice. A horrible situation to be put in. Being cruel to be kind in effect.
We fed her, put her down and left for some dinner and to bring in more things.
At 11pm we finally got her to sleep and left the door open whilst letting the nurses know we were going to go get some dinner.
We went downstairs, Dean called Mum, Mum broke down into tears. Dinner was manky, didn't feel like eating really. All I could think was things like 'This time tomorrow she will be in PICU under sedation, I cant even cuddle her then'
We went back up, she was asleep for the night.
The night was long and COLD.
There was a huge window which I swear had a draft in, Grrr.
I had little sleep, I sat there looking at My Meghan, thinking How gorgeous she is, and how she doesn't know what's going to happen, Will she hate us? She wont be able to wear short tops without being questioned about her scar, she will grow up being different from the rest, she will hate us I convinced myself.
Dean asleep and snoring on the pull down bed, A nurse came in; to take Meghan's temperature.
She whispered 'is he asleep?' I said ' yeah hehe' her reply was 'aww bless, that's not fair him on the bed ..' I told her I wouldn't be sleeping much hehe !!
Her temperature fine.
She then got a finger and found out her SAT's

At about 2am I woke dean to have the bed, my back was aching so bad I thought id break in half permanently! So I had a few hours sleep on the bed, woke at 4.30am and said he could have the bed back!
Room was freezing, absolutely freezing!
I stayed awake for the rest of the night, morning what ever you wanna call it !

The morning came, I saw the sun rise over the city.
So scared, so so scared.

Her last milk feed to be at 8am so 07:30 went along to the parents room to warm her feed, came back had to wake her for it! She didn't have to wake or start crying bless her !
She took all 8oz, then she went back to sleep!
Her last clear fluids to be at 10am, she slept through until 11am.
She woke then got back to sleep, then when she woke at 12 was so restless, really wanted and needed milk and couldn't give her any, seeing her tears, trying to settle her. Finally got her back off to sleep but with alot of struggles, tears and hunger cries!
13:45 a nurse comes into the room; ' I have some bad news' she started..
'Sorry its been cancelled'
That room turned blue there and then, both me and Dean head in hands, 'Are you joking?' 'You what?'
'The first case has got complicated, cant say too much but his heart is still exposed, he is still on heart and lung bypass.. I'm sorry..'
'Not bloody half as sorry as I am dear' I thought.
We had committed ourself to this, mentally, physically AND FINANCIALLY.
I was ready, I was mentally prepared for this. I didn't expect a cancellation.
She then brought in someone else who said.. 'I've even had them cancel whilst the patients about to go under on the table!' As if in some way that should comfort us.
They said to feed her, what ever happens it wont be going ahead today.
We fed her, as we were doing so they came back and said, Mr Parry had just called, Saying we could go home if we wanted he would get his secretary to contact us for a further op date.
They said we could wait to speak to him or go home.
We said we'd like to stay to speak to him, about her condition and how severe things are etc..
They said OK fine and off they went.
Within 10 minutes they were back, practically forcing us to leave the building. They obviously needed her bed.
We said we wanted to speak to him, that didn't bother them.
We also said, does this mean she needs her Synagis injection now? They said 'don't know, we don't have it in I am sure' we packed and left.
It almost felt like she was saying 'don't know don't care'

I am still so angry at how we were treated, I actually want to scream or murder someone at the very least.

Meghan's next operation date is for 4th March 2009, which is the day before my 24th birthday; which in effect means she will be under sedation and not even allowed cuddles on my birthday, What a great birthday that will be ay ! Lets hope and pray this one isn't cancelled either!

Saturday 14th February 2009.
**HAPPY CHD AWARENESS DAY**

CHD = Congenital Heart Defects, A heart condition that has been present since birth.
Tesco Cirencester Extra are doing a 'wear red' day, Meghan's donation box's on the end of EACH checkout, Half the flower wrapping money is going towards This Website, as well as the donation box's!
We popped in and it brought tears to my eyes to see my daughter on box's, staff wearing red, and the lady on the flower wrapping stall.
My girl is famous, it may not be for a good reason; but I hope something good will come of it; research.
We need to research CHD's, figure out why they happen and more importantly stop it happening again.

I want to say a personal thank you to everyone who's continued to show their support to us throughout this difficult time. Meghan's Nanna and Grampa Macphail are being really supportive of us as well as all my online buddies aswell as offline buddies, Ruth, Ann, everyone at the boy's nursery, mummies included, Sally who is a really lovley lady who is prepaired to help as and when and a huge thank you to Tesco Cirencester Staff who made their 'wear red' day a success.
You are all being so lovley to us; we cannot thank you enough.



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