Our little girl has a whole in her heart...feel so sad
Hi everyone
Hope the sun is out across the country today? its trying here in Devon!
Well we had such a shock yesterday...we went to see a cardiologist as Matilda May was diagnosed with a heart murmur a few weeks ago when we were on a childrens ward for suspected menengitis. (lumbar puncture broke my heart!)
He did some tests and she was such an angel bless her at 10 weeks it must all be so scary? they said she has a whole in her heart a VSD? has anyone else got any experience of this?
We also go back next week as she has an enlarged right kidney that wont go down so she is having some dye pumped round to see the flow etc.
My poor wee girl she has had alot to content with in her first few weeks with us!
We see the cardiology team again in 3 weeks after the kidney results and they will decide how to proceed.
Hope everyone else is able to keep this cold at bay?
much love
Moo & Matilda May xxx
Hope the sun is out across the country today? its trying here in Devon!
Well we had such a shock yesterday...we went to see a cardiologist as Matilda May was diagnosed with a heart murmur a few weeks ago when we were on a childrens ward for suspected menengitis. (lumbar puncture broke my heart!)
He did some tests and she was such an angel bless her at 10 weeks it must all be so scary? they said she has a whole in her heart a VSD? has anyone else got any experience of this?
We also go back next week as she has an enlarged right kidney that wont go down so she is having some dye pumped round to see the flow etc.
My poor wee girl she has had alot to content with in her first few weeks with us!
We see the cardiology team again in 3 weeks after the kidney results and they will decide how to proceed.
Hope everyone else is able to keep this cold at bay?
much love
Moo & Matilda May xxx
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Replies
sorry to hear your little girl isnt well, but they can fix it, she sounds like a little fighter
xxx
She def sounds like a little fighter and they seem to be on the ball at the hospital, keep us updated and hope it all goes well.
Amy n Amber xxxx
My daughter had a number of problems with her heart due to congenital heart disease. She's now fine after open-heart surgery but it was a very scary time, so I can understand what you're going through. Grace had an ASD, similar to a VSD I think - both holes in the heart anyway (one is atrial septal defect, the other ventricular septal defect).
I think it depends on the size of the hole - sometimes it can be managed with medication (diuretics, ACE inhibitors). Or if it's larger, they may need to operate. But I'm by no means a medical expert, that's just what I've picked up from our experience. Your cardiology team will tell you more. Don't be sad though - they can do an amazing job in repairing the heart, I'm sure things will be just fine.
Both of my girls (twins) have single kidneys. Not quite the same as yours, but we did also have the test to pump dye round the kidneys. I wasn't keen on that, as poor Elizabeth looked really upset. Although not as horrible as a lumbar puncture - that must have been horrible.
Hope everything goes well.
Emma
Big hugs and take care.
xx
He went to see the consultant every three months while he was a baby then after a few years they made his appts every six months then a few years back they said the hole was small enough now for him to come back only once a year and at his last appointment in the summer they said the hole had closed up totally!
It didn't really affect him too much when he was younger, maybe he'd get short of breath quicker than the other kids and he was always quite skinny but now at 12 you wouldn't know any difference, he's jsut made the local football team and he can swim really well, he's a very energentic boy and you'd never know there was anything wrong with him.
fingers crossed for you
xxx
My little girl had a heart murmur when she was born. A valve in her heart hadn't closed as it should have when she was born and blood wasn't pumping effectively to her lungs. The cardiologist also found she had a VSD which he said was small to medium sized. Due to the size of it she didn't need any medication or an operation which was a relief but she was monitored every 6 months. The valve in her heart closed by the 6 month check so it was just the VSD that was monitored from then on. She has developed normally and has shown no outward signs of her hole in the heart.
She had her check up last week as she has just turned two. I was amazed to find that on scanning her heart the hole has totally closed already. We were told previously that as her heart got bigger the hole would get smaller in comparison but not to expect it to heal over for many years. She has now been discharged from the cardiologist.
We really didn't expect that news last week.
I hope some of this will give you hope for your little fighter and that you will get some positive news of your own.
I wish you all the best.
xx
carrei faith
this site really is a lifesaver especially on down days! its great to see the sept mums doing well too ! xx Moo & MM