heart valve not developing properly at 20 week scan. is there any hope?

[Sarah lo]

I'm posting for a friend. At her 20 week scan the doctors found that one of her baby's heart valves hasn't developed as much as it should have. They told her that if the baby survives to term they will have to operate on the heart straight away and she may still need a transplant.

Has anyone else been through this and have success stories?

 

[isabelsmummy]

No advice but I can't even imagine what your friend is going through, my thoughts and prayers are with her xx

 

[Siyren]

hey sweetie, if you pm me, i'll give you my email address to give to her, unless she's joining bnb
im mummy to a 2 year old girl named Alyssa, who has absent pulmonary valve syndrome,
at 20 weeks they said we'll scan again in 10 weeks, but she might not be operable at all,
and 30 weeks they said, if she can breathe at birth an her heart doesnt compress her lungs we can operate
at birth they said she'd need operating on by 6 months
by six months, they were calling her a miracle baby- she's still not needed anything doing, and im hoping she'll make it significantly further without surgery.

i dont usually talk much about the explicit details of lyssa's heart on here, so if your friend would like to email me, drop me a pm and let me know

but i hope this helps x

 

[Sarah lo]

Thank you. I feel so awful for her, she had such a hard time TTC and now this.

 

[Siyren]

is your friend being tranferred to a specialist hospital by the way?

 

[little_lady]

No advice but big hugs to your friend

 

[Sarah lo]

hey sweetie, if you pm me, i'll give you my email address to give to her, unless she's joining bnb
im mummy to a 2 year old girl named Alyssa, who has absent pulmonary valve syndrome,
at 20 weeks they said we'll scan again in 10 weeks, but she might not be operable at all,
and 30 weeks they said, if she can breathe at birth an her heart doesnt compress her lungs we can operate
at birth they said she'd need operating on by 6 months
by six months, they were calling her a miracle baby- she's still not needed anything doing, and im hoping she'll make it significantly further without surgery.

i dont usually talk much about the explicit details of lyssa's heart on here, so if your friend would like to email me, drop me a pm and let me know

but i hope this helps x

Thank you that's really good news for your LO, and I'm sure it will give my friend some hope. I will ask her if she'd like you email, thanks.
She's also been told they'll scan again in a few weeks. Really hope its a better result at the next scan.

 

[Sarah lo]

is your friend being tranferred to a specialist hospital by the way?

Yes, Newcastle I think she said. I've heard they're pretty good..?

 

[Siyren]

send my best to your friend, im hoping she gets a great outcome at her next scan

 

[Babyface179]

My thoughts and prayers are with your BF and her baby. It's lovely you are on here trying to find information out for her. Hugs to you all x

 

[midori1999]

I can't really help but my 7 year old had open heart surgery at the Freeman in Newcastle at 6 months old and they were absolutely excellent!

 

[satine51]

My sister's little boy had something similar, she was told he may not survive and will need to be operated on straight away. He was operated on a week after birth and we have just celebrated his 1st birthday! He may need 2 more surgeries, but it is amazing what modern medicine can do nowadays. You would not tel there is anything wrong with him, he is such a cheerful little boy!