UPDATE... Our poorly Twin girl - Fertility Network UK

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UPDATE... Our poorly Twin girl

Becky179 profile image
20 Replies

Morning lovely bunch.

So we had our appointment with the fetal heart specialist on Tuesday. And had a thorough 2hr scan of both babies hearts. Sadly as expected one of our Girls has a congenital heart defect. Which is called Complete Atrioventricular Septal Defect (AVSD). In short it means the two arteries didn't split when developing, plus there are 2x holes also. This means she will need heart surgery in either the 1st month of life or within 4-6 months. We were also hit with the news that this condition goes along side Down Syndrome, as it's a chromosomal abnormality. So after being hit with the heart condition, we also have the possibility of DS.

We go back in 4-6 weeks for a re scan with the heart specialist then we also see someone about the DS.

She is still my beautiful baby girl & I will love her & do everything in my power to protect her & give her the life she deserves but why is life so unfair some times. Everything we've gone through just to get to this point. I'm worried about how I'll cope with one very poorly baby & another new born that also needs her mummy. I don't want to neglect either.

I feel so sad, it has been one thing after another since day 1 & I'm starting to feel angry about everything we've been through, I'm also trying to be positive, but it's bloody hard! Maybe we weren't meant to have any more children & this is the universes way of telling me... I know it's silly thinking like this, but why do some people have things so easy & others struggle every step of the way.

Thank you for reading my essay! Xxx

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Becky179 profile image
Becky179
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20 Replies
Cinderella5 profile image
Cinderella5

Awww Becky, what a thought for your little one having to go through surgery so soon after delivery.....so devastating! You're right, its not fair what some of us have to go through. I can see through your angry and upset that you sound incredibly strong and positive even faced with difficult times ahead and that is amazing hun! Thinking of you and sending you lots of love and hugs.xx

Becky179 profile image
Becky179 in reply to Cinderella5

Thank you very much. I'm trying to be strong, it's hard but I've got too! X

Millie198528 profile image
Millie198528

Sending lots of love to you and your OH like you said you will still love your little girl no matter what just take it a day at a time and hopefully everything will be OK for your little twins xx

Becky179 profile image
Becky179 in reply to Millie198528

Thank you very much xxx

Daisy14 profile image
Daisy14

Oh my lovely I can’t even imagine. It’s just so unfair and I completely understand your rollercoaster of emotions. This is just the game of chance and not to do with any of your choices, you know that I’m sure.

She is your girl and she is desperately wanted and loved as is her sister. The fact you are worried for them shows they have everything they need in life already.

You are strong, even I’ve seen that since we first messaged a few years back. You have fight in you so ride the rollercoaster and get your strength up.

It’s a small advantage, but you won’t have the first time mum bewilderment perhaps as much? I do you hope have lots of support around you.

Sending big love xx

Becky179 profile image
Becky179 in reply to Daisy14

Thanks Daisy! Im very lucky to have amazing family & friends that always rally around when needed to. I'm sure I'll cope as that's what we do! Xx

Wishfully profile image
Wishfully

Oh no Becky, I’m so sorry to hear this, you must be in bits. What a total rollercoaster!

It sounds like you are getting lots of good care though & can plan for the best course of treatment, and that’s the absolute best thing you can do.

Stay strong lovely xxx

🎃💓🎃💓

Becky179 profile image
Becky179 in reply to Wishfully

I'm keeping strong for Hubby, it's really hit him hard.

I'm very grateful that the sonographer picked it up. And we have to travel a bit of a way to the hospital in Bristol, but apparently it's one of the best. Which is comforting. Xx

Wow. Such a hard hard time for you. Well done for being so strong and for sharing your story. I really hope all turns out positive for you all xxx

Becky179 profile image
Becky179 in reply to

Thank you, I like to share, so if anyone is is the same boat we can help each other! And everyone on here is such a comfort, it really helps. Xx

I can imagine you must've been devastated to hear this news and I sympathise with your current feelings of how you will be able to look after both with one having the potential to be so poorly. But you will manage it, and you will find equal time for both, because it just happens and no-one knows how they did it afterwards.

I wanted to offer you some comfort though. I was born with a hole in my heart, way before scans could pick this up in the uterus, so it came as a bit of a shock to my parents when I was born. They delayed surgery on me and the hole closed on its own. It is possible still that your daughter's holes will close before birth, or shortly afterwards. I can't advise on the arteries front, but it is possible that you will see improvements and the surgery won't be quite as awful as it might be with the present diagnosis. Try to put these thoughts to one side for the moment and enjoy the rest of your pregnancy. You will be at roughly that time of getting the fluttering of movement and its only fair, after everything you've been through, that you enjoy those for exactly what they are x

kumkums profile image
kumkums

😪😪😪. I'm so sorry for what you are going through. It is indeed very sad and unsettling. May the Lord give you the strenght to go through this. I pray for your baby girl that the Lord will touch her, heal her and give her good health in Jesus' name.

Please keep the faith and hope for the best.

Hi Hun, I just wanted to give you a big hug when I read this, but believe me you’ll find the strength to get through it and both babies will be fine. Sending you both lots of love and positive thoughts xx

Hi Becky,

So sobering to read your update - really makes me realise that the journey does not end when you get your precious BFP.

I am pregnant and not taking anything for granted or being complacent in any way.

One thing I will say, that is clear from your messages, is that these 2 girls will be so lucky to have such an amazing mother who loves them very much.

I hope that you can get the strength to cope and take as much outside support as you can.

Lots of Love,

xxx

Missy_22 profile image
Missy_22

I can’t inagine what your going through but you are showing so much strength. Keep going and I’m sure it will all work out. Hope you have plenty of support around you.

We are all here for you and thank you for updating us.

Please take care xxx

Anya80 profile image
Anya80

Just wanted to send you lots of love Becky, you are very strong woman💗 I hope that all will be well in the end with your little girl, miracles happen and we need to believe them. Lots of hugs xxx

Tugsgirl profile image
Tugsgirl

Can’t imagine what you’re going through, you must be so worried. Sending positive wishes your way xx

Dunla profile image
Dunla

I have no words! Such difficult news to be faced with. I can’t even begin to imagine how you must be feeling right now. Life can be so very unfair. I’m thinking of you and your little girls and praying you find the strength you need to face whatever challenges lie ahead. Lots and lots of love xxx

Mifkipi profile image
Mifkipi

Becky, you are such a strong woman. I am sure that you will find the strength to overcome all these hurdles in front of you. Thinking about you and the girls x

Gosh how very difficult for you. You are in my thoughts xx

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