heart conditions

[Siyren]

sorry i hope this ok in this area of the forum?
im just having a bit of a melt down, Alyssa is just over a year old and since 20 weeks gestation we've known she has a heart defect.
last time great ormond street saw her they said she's doing great and they'll see her in a year.
but every now and again, i just remember that she's not 100% ok, still may need an operation some day and it terrifies me

 

[24/7]

My Dad has ebsteins, a very serious heart condition, and although he has had surgery in the past, he lives life just as anyone else does, and you would have no idea anything was wrong. He came through all the surgeries absolutely fine, always bouncing back just fine.
Wishing you and your LO all the best. xx

 

[Siyren]

thanks hun that was really nice to read

 

[Mickeyc]

sorry i hope this ok in this area of the forum?
im just having a bit of a melt down, Alyssa is just over a year old and since 20 weeks gestation we've known she has a heart defect.
last time great ormond street saw her they said she's doing great and they'll see her in a year.
but every now and again, i just remember that she's not 100% ok, still may need an operation some day and it terrifies me

Hi,

My little girl was born with heart defects. She has spent so much time in and out of hospital, I feel your pain!

Sophie had her 1st open heart surgery at 12 weeks old and she was amazing, she recovered so well and bounced back really quickly.

We thought all was well but she was diagnocsed with another cardiac condition and she had her second open heart surgery 3 weeks ago. Again, she has been brilliant and recovered really well, apart from her scar you would never guess she has had 2 major heart operations.

I have discovered that kids are so resilient, I think it is harder for the parents at this age. Seeing Sophie in PICU with all her wires and monitoring equipment was awful, but I am so proud of how strong she has been.

The thing that gets me the most is people (who dont know Soph's history) saying 'ooh isnt she skinny' & 'Isnt she walking yet, aren't you worried' I know how well my little girl has done and considering what she has been through she is doing amazingly well. When you compare her to other cardiac babies she is positively chubby!!

Sorry, went off on a bit of a rant at the end!! Really just wanted so say that I know how tough it must be for you. I'm sure your LO will be fine, but I know its hard to cope sometimes when the future is so uncertain.

What is your daughters condition?

PM if you want to chat.

 

[cuteboots]

We only found out about my daughters heart condition when she was brought into hospital at 8 weeks due to failure to thrive. They nearly passes over this because they assummed we knew! It was the most frightening time of my life and I remember worrying that if my daughter got upset and was crying she could die and when they are sticking so many tubes and needles into you lo its hard to stop them crying especially when they're so young and their little veins aren't strong enough to cope with the needles.

When you look at my lo you wouldn't think there is anything wrong with her, she's so much energy, she so tall (98th cen) but skinny, its only when she get something, say a cold which an otherwise healthy child would shurg off in a few days, shes completely floored and lifeless, its times like this that I remember that she too many need operations.

I learn from my lo, be strong and enjoy life each day as it comes, when times are bad its time to take it easy for a bit and give extra cuddles.

 

[going_crazy]

Sorry if I'm butting in here. My daughter is a week old. When she was born, her newborn health check showed a heart murmor. To cut a long story short, she was rushed to St Thomas's hospital (Evelina) where she was diagnosed with TGA, VSD and Pulmonary Stenosis

She had a balloon septostomy which failed so at 4 days old she had a BT shunt fitted. She is currently doing well, but will need open heart surgery at about 8 months old - the Rastelli Procedure.

If anyone has any advice, information or experience on either the conditions or the surgery, it would be really nice to hear from you.

xxxxxxx

 

[going_crazy]

Double post x

 

[maisie]

hi there,

i am new to this site, but i wanted to let you know that i understand the worry. my son will be 4 next month. he has down syndrome and was born with av canal defect. he had 2 surgeries when he was 7 mos old. he is thriving & doing very well, but every six months i become anxious that they will tell me he must go under again.

he gets the typical colds 7 ear infections, but he has never been very ill. it is hard to think about what can happen in the future, but for now, he is healthy, almost four and giving me a run for my money!

 

[kenzies mummy]

hi im new here,
my son has tga vsd and pulmonary stenosis.
he had a balloon septostomy at 2 days old and is due surgery any day now, he will be 2 years old on thursday and copes very well,
if any one wamts to chat please feel free to pm me..

love shell xx

 

[kenzies mummy]

hi going crazy, as i am new here i cant post visitor messages yet,
kenzie copes very well with his heart conditions, although he is very blue and breathless, he is also very small for his age and dosent eat very much.
he is like any other child in any other way though.
kenzie was to have the rastelli when he was 2 but that changed when he was a year old they decided he was to have the nikiadoh surgery, its a slightly adapted rastelli.but after having a cath and toe few weeks ago they have decided to do the arterial switch on him, this is very unusual with tga, vsd and the ps, but kenzies stenosis is slightly below the pulmonary valve so they can cut away some muscle and the narrowing will open up.then he can have the aorta and pulmonary valve switched around.
im sure your little one will do great with the shunt, until its time for surgery.
im always here if you need to chat or ask anything as i know how hard this is.
i am a member of hearline were there are loads of tga kids on it that have had the rastelli, so might be some use to you.
love n hugs to you both
xx

 

[WW1]

Hi. I totally understand how you're feeling, Siyren. My LO has been diagnosed with an ASD. We've an appointment in Leeds next month to find out more information as she is due to have a major operation in January (not heart related) and we need to know whether her heart defect is likely to affect the op.

They've said that she is likely to require heart surgery during childhood but they wont know exactly when (they'll scan regularly) and whether it will be keyhole or open heart.

I worry more when Rebecca has a cold or is under the weather as I think about the strain on her heart but the consultants said there's nothing to worry about ~ easier said than done!

 

[Newt]

must be hard hun, I can't imagine the worry this would cause, I's sorry I dont have anything constructive to say but to send you and your lo a massive and kisses

 

[Aidedhoney]

Hello Hun


You know my story lol

Alex has Trucus Arterosus had OHS at 2wks old and is going for cath lab on 9th of November.

get yourself over to heartline forum its brilliant xxx

BnB is brilliant but heartline is for us heart mummies xx

 

[Siyren]

ooh i spy aided- i shall text you tomorrow miss.

thanks for all the support
Lyssa is still doing great- she has Absent Pulmonary Syndrome- so in the event she does need her op it will be open heart.
she's due to be scanned again in january x