#1
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I don't really know what to write ~ My daughter is 2 (nearly 3), She is due to start nursery this september and school next september and I really don't want her to go.

She was born with Congenital heart defect known as 'tetralogy of fallot', she was 7 months old when she was operated on, this involved cracking open her chest, and stopping her tiny heart for 5 hours while the operation was carried out 'repairing' her heart.
Her heart will never be normal, and the operation has left her with pulmonary valve regurgitation and she is always at risk of sudden cardiac death.

How will I ever live with myself knowing I wasn't there for her final hours if some thing was to happen?
And to flip it
How will I ever live with myself knowing I wrapped her in cotton wool for her life and didn't let her make friends and learn if the worst was to happen?

I really don't want her to go now, We are in June - it's only a few short months away and with the recent passing of a year 6 pupil in the school (also a cardiac patient) it's put the frighteners on me, big style.

These children CAN and DO go in split seconds with little or NO NOTICE.

Every day is a real blessing with her.

How am I supposed to feel? Am I supposed to feel over joyed she's still here, or can I mourn for the future of hospital admissions, tests and operations that await my dear daughter?
It feels like I am mourning the loss of my healthy child, a future I only had to worry about how many grand children she would produce and other trials and tests within a normal life, but now I am worrying about not only the pulmonary valve operations and possible heart transplant but also if she wants children what she will have to go through in order to have a child, will the child have this condition? Now I have had twins (arghh) will she conceive twins too? This will put her life doubly in danger.


I love her so much, my heart breaks in two every time I think of her health and her future.
I want to know why it happened, I am a very logical person, I like explanations for everything, I know I did nothing wrong in the pregnancy and it hurts me even more that she's like this, I know I didn't do anything, I want to know why it happened and how. I know that the heart forms around 18 days past conception (this is around a week after we all have our BFP's) but I really don't buy this 'it's just one of those things' story lines.
I want answers and I want them now.

Why my daughter has to suffer I want to know.

Why do we believe in Jesus and God if our children are born to suffer a life of horrible hospitals and operations and pain?
Murderers get healthy lives behind bars, yet innocent children are born with life-long, painful conditions such as Meghan's CHD.

I just don't understand.


I am really working myself up for her starting Nursery, I am always on edge now and that's with her by my side, I can't imagine when I am separated from her for 2-3 or more hours per day.

I have made it quite clear on the nursery admission letters our main concern is that they call 999 immediately then call us, if she does go into cardiac arrest she probably won't even live until the crew get to her (if I had enough money I would buy portable defibrilator, because they will save her life if she goes into cardiac arrest) but the machine would cost £1,000 + and then I and other people around her would need medical training on how to use the machine and I just physically don't have that sort of money.

I am becoming so upset, anxious and depressed of the future that awaits her.

Her oldest brother is also suspected as being ADHD, GDD, dyspraxia, sensory overload issues and hypersensitive skin.

Sorry for the long post, Just had to get it out, I feel so alone x
#2
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My thoughts are with you. It is really hard letting go of a sick child. Matt has a condition that he suddenly stops breathing and needs to be rescucitated when it happens. Not as severe i know but the thought of them not getting to him in time terrified me. He started nursery in january 11 and he's never looked back. I cried my eyes out for the first day as he didin't even say goodbye. We try to let matt live a normal life as possible. We take each day as a blessing and feel he needs to enjoy life incase one day he can't be rescucitated. It porbabaly stemmed from us nearly losing matt about 2yrs ago. doctors told us to call everyone that he wouldn't make it through the night but he did. Sometimes it hard to let them be Children even though you know they are so sick. We want matt to feel like a normal child sometimes (not easy with all equipment we have to carry around for him). It's not a decision to take lightly. We struggled for ages to wonder why matt was so sick. everytime we went to hospital they found something else wrong with him. Perhaps it's our outlook on life we cherish every moment with him and keep positive and tackle everything head on. Having a disabled child is like being on a rollercoaster. it has it's ups & downs but you never want to get off. hope i've helped xx
Heart Mum to Abigail 8 & Matthew 4. He stops breathing & needs to be resucitated. Has Bulbar Palsy & was born with a hole in his stomach, has mic-key tube fitted. Matt has heart/lung problems and is also tube-fed.
#3
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I read your post and my heart went to you. Fear is horrible. It grips us all at some point as we get to grips with our childs diagnosis and letting them be children and the extra dangers that presents. However I do see why you are so much more worried and fearful.

I think Worry only about today as tommorrow will bring its own worries. Get through today, love and enjoy today, allow her to do the same and you will find happyness in it all. You are absolutly doing the right thing in sending her to nursery, she will love it and you will make her happy. You could always stay for the first few sessions, my sons nursery have offered me that option.

There is no way you are meant to feel, we all cope with it differently, and some days are easier and some harder. If she is at the point of starting nursery you are doing something right Smile

In the recent program Born to be different. One of the parents said that when you get the diagnosis and know something is wrong. You are taken out of the world you know and transported into something completly alien. You feel completly alone and like no one around you could possibly understand. But we're here, we can't answer the why's, and we'd all take it away from our children if we could. I hope we can send some love and support.

Just as a side, have you thought about fund raising for the equiptment and training? We've done some for our son and in total raised over £2000 for various things. A friends son has no legs, the NHS do not provide adequate ones, so she fundraises for the incredible amounts prosthetic ones cost. try it, you'll be amazed what people will give and help for. Smile
#4
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Thanks, both of you - I'm so sorry to hear of your childrens conditions too xx

I have hours at a time where I think Nursery will be a great thing for her, then I have hours like, worried out of my brain for her, I know she needs to live her life and become her own person, but I just don't want to leave her side in case she dies knowing the last faces she saw was strangers and not Mummy!

I have only raised £350 ish, £100 for the British Heart Foundation and £150 (the same amount the school managed to raise.. a whole primary school...!) for the Wallace and Gromits Grand Appeal, which is basically funding the Bristol Children's Hospital, where she had her surgery.

My other special needs child is the eldest boy and he is ADHD, etc (I think I mentioned that already) and he had his hypospadias operation corrected here too..

I can never forget the trauma we all went through watching her fighting for her life in Paediatric Intensive Care Unit, It was horrible, Sounds silly, but I wonder if Family Fund will help fund a defibrilator? I can dream I suppose.. I read about those new braces that are mobile defibs, they warn others to stand back while they shock the patient and tell them to call an ambulance etc..

Thanks for your replies and my love goes out to you both, it's so hard emotionally to parent a sick child, and part of me wants to slap people with healthy children when they moan that their child has had a cold for * days, Arghhh.. The way people don't cherish what they have and how they have it, makes me sooooo mad! X
#5
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Hi sounds like your finding it hard letting her go , we all think and feel the same as we do more for are special children and watch over them all the time , but it will do her the world of good to go and mix with other people and it will also do you good as well , we all need a break sometimes .

I know i feel like i'm mourning my son's normal life at times , my son has no speech and never will , its something we take for granted that our children will talk and i want answers as well and why this happened . I've come to the conclusion that my son was sent to me to help me out and make me a stronger person .

I adore my son so much but i know there is days that i feel i cant cope with it all , but i just look at him and remember he needs me . I always thought about what will the future hold , now i just deal with it each day , as none of us know what the next day will be .

It's so hard letting go that 1st day of them but it will get easier and it's for you's both and the time she is at home, you've had bit of rest and will enjoy her even more xxx
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012


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