More tough news @ 20 weeks

Hi everyone - I've tried posting this update twice but my app keeps crashing on me so I'm back to the old fashioned log in...

So, we had our 20 week anomaly scan and our little girl's second cardio scan last week. The anomaly scan was all good, she's still wriggling like mad which I can now feel and it's everything I dreamed of in terms of excitement, wonder and awe that there is a little life inside me. Her spine, stomach, kidneys etc all look just fine. And her feet! At one point she had her foot over her head, she's clearly very flexible 😍

But unfortunately the cardio scan was not so good. As suspected at 15 weeks, the cardiologist confirmed she has a moderate sized VSD or hole in her heart. These are common in 50% of children with Down Syndrome apparently. The good news is it's the lesser of the two common congenital heart defects, the bad news as it is moderate rather than small, it is unlikely to close on its own and we are being prepared that our daughter will probably need open heart surgery when she is just a few months old. So we spent last week feeling fairly devastated but also talking to some very knowledgable experts who have at least reassured us that this type of surgery is common and has a very high chance of a good outcome. Doesn't change the horrific thought of seeing our baby go under the knife but for now we are trying not to think about it too much and keeping our fingers crossed that another miracle occurs and she somehow won't need it.

Turns out the getting pregnant part wasn't the most stressful part of our journey...

Hope you are all doing fine and keeping my fingers crossed for everyone whatever stage you are at!

Xx

20 Replies

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  • Wow you really have had it tough, and all these new things keep arising your strength is inspirational to others. I know it was bad news but at least now they know they can closely monitor her and do there very best for her. Thinking of you xxx

  • Congratulations on your pregnancy glad it's going well,

    Sorry to hear about your baby's vsd. Wish you well for the rest of your pregnancy and wish you lots of luck for your baby's operation xx πŸ€πŸ€πŸ€

  • Fingers crossed for you. She is a fighter to get this far so hopefully this is the last bad news. x

  • hi sipidania. Just a quick message to say a close friend of mine was in a very similar position and found out at 20 wk scan about her little ones heart defect. The amazing surgeons looked after him and did an incredible job. He really is the most amazing,tough little boy with so much energy and despite what he went through in his early life you would never tell to look at him, he's so happy and energetic. Best wishes to you and your little one. I can only imagine how heartbreaking it must be not to mention worrying but your beautiful little one will be in the best possible care. Xx

  • Wishing you and your baby all the very best πŸ€ X

  • Glad to hear that the pregnancy is progressing and you can now feel you little one jumping around. Cant imagine how it must feel to know your little one will need surgery, just awful! Thinking of you all!xx

  • I actually have a friend who was born with a hole in her heart and had surgery very soon after she was born and she is now a healthy 32 year old, so don't lose hope. Your little girl is a fighter just like you!

  • Hi Sipidania. What a continued rollercoaster for you. Sorry to hear this; I'm glad to hear you are getting support and have access to experts for advice and comfort. Wishing you all the best for the rest of your pregnancy, that you continue to enjoy your baby girl's kicks and wriggles. And praying that a miracle does happen and an op won't be needed. Xx

  • Your strength and integrity are very inspirational, and I admire the way you are getting through each hurdle. Your little one sounds like a fighter and I wish you the the very best in each hurdle and pray for the best possible outcome xoxo

  • Hi sipi

    As you know my munchkin caught meningitis and because at less than 3 weeks old his veins were too teeny to support the cannula they ended up putting lines up to his heart, it was very very difficult handing him over to the theatre team and giving him that kiss goodbye, but it was saving his life, and the hospital staff were faultless. So supportive. We had repeated talks with the anaesthetic team and surgeons over and over again until he was happy we were happy. In the two hours it took I just sat there and prayed. And I even caught my other half doing the sane and he's been an atheist all his life!!

    Your little one will be fine, and it will make you a stronger person for it.

    Try to enjoy the rest of your pregnancy, believe me I know that's easier said than done.

    be strong for your little one ❀️

    Xxx

  • Thank you Miss Winky. How is your little one doing now? X

  • He's doing good, still has lots of tests to go through and we still don't know if any damage is done mobility or learning development wise. But we will cherish him regardless πŸ‘πŸ»And cross any hurdles as we come to them. I don't think the worry ever stops. But I think it's a sign if being a good (normal) mum.

    Xx

  • I'm so glad - he is clearly a little fighter too and has been through a lot already xx

  • Its s tough journey ...finger crossed for the little princess's heart condition. I pray that everything gets better for her.....

  • Congratulations on your pregnancy and sorry to hear about your daughters heart. It's amazing what they can do now, wishing all goes well for her and for you xx

  • Hi I'm sorry to read your story after a struggle to get pregnant you hope it will be smooth sailing. Your message reads like you are going to be amazing and strong mum for your little one when they are here. Scary of course but I wish all of you all the best xx

  • Gosh Sipidania, what a very stressful time you've had.

    I must say from the tone of your posts that you seem to handle what life throws at you remarkably well and with a glass half full attitude that will clearly help you get through anything.

    You seem like such a strong and positive person that no doubt your beautiful daughter will be lucky to have you as a mother and while these massive hurdles are so difficult often such trials increase an already unbreakable bond which I'm sure you already share.

    Good luck to you all my lovely, may your bravery carry you through tough times and your daughter's fighting spirit continue to support her journey into her a strong young lady just like her mum. Xx

  • Wow that's really really tough. But d kinda courage u r showing is really amazing and u have become such an inspirational figure for I'm sure many women here. God bless πŸ™πŸ™

  • Hi sipidania. Oh dear! Not what you want to hear, but is something we have to look out for with a Downs baby. I have seen this operation done many times, and never ceased to be amazed at how quickly these little ones got over it all! A baby/child only lies down for as long as it needs to and recovers sooner than we think. What looks to be a long scar, always stays that size, so when she is an adult, it will still be 3-4 inches long. No one can ease your worries completely, but rest assured your little girl will be fabulously looked after, and I'm sure will recover quicker than you think. She can hear you now, so talk to her lots and play her some music. You're halfway through your pregnancy now, so keep well and fingers crossed, and good luck with the 2nd half and delivery. Thinking of you. Diane

  • You r doing so well staying so strong thru all this! Ur little girl will be able to use your strength so she couldn't be in better hands xxx

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