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


  • Oh hun, am so sorry you're feeling sad. It does sound like your LO has had to go through alot, and you of course. Just wanted to say a friend of mine has this (the heart aspect), and he is a happy 24 year old now after having his birthday afew days ago, and although he still has regular hospital check ups they are getting less frequent as everything is fine. He is probably fitter and healthier than I am to be honest, and he doesnt let it affect his life, you wouldnt even know it unless he told you. He even played some ice hockey with me before I was pregnant. xxx
  • bless i know how horridble the meningitus scare is, at 2 weeks old DJ had a UTI which they initially though was meningitus, the lumbar puncture and canula were awful..

    sorry to hear your little girl isnt well, but they can fix it, she sounds like a little fighter image

  • Oh huni, lots of love to you and Matilda May. I remember you saying about her kidney in the Sep forum.

    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
  • Hi there
    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.

  • I really hope everything turns out well and they can do something for your little girl. I have no personal experience of this, but I do believe that these are quite common conditions that can be treated and have others have said, people lead happy healthy lives.
    Big hugs and take care.
  • hi there hun, my nephew was born with VSD hole in the heart but it wasn't that bad that they wanted to do surgery so they decided to keep an eye on it, that was 12years ago.

    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
  • Hi,

    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.

  • Oh hun I'm so sorry. Abby had a heart murmer but on further inspection they discovered she has tetrallogy of fallots, which is a serious heart condition and a whole in the heart is one of the problems with her heart. She's had alot of surgery due to the extent of her condition but she is a happy, healthy little 4 year old now.
    I wish you all the best.
  • Just wont send big hug to both and wish best of ok i to have heart problems let now how she goes on
    carrei faith
  • thanks girls

    this site really is a lifesaver especially on down days! its great to see the sept mums doing well too ! xx Moo & MM
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