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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

fuild on the brain

12 replies

amyeddie · 18/04/2018 11:06

im having twin girls👼👼 they are growning so well but last week at my 28 week one of my girls severe mess on fuild in brain, yesterday at 29 weeks scan its still there, they where telling me there a very high chance she going to disabled.... im in so much shock.... i don't understand for 28 weeks she is fine and now she not..... have anyone had this and what was the outcome....

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miki123 · 18/04/2018 11:59

Hi, I am not an expert nor a doctor however I just wanted to let you know that I grew up with a friend who had fluid on the brain as a baby and she is not disabled, she is in fact an accomplished journalist. Sendings hugs xx

Sushirolls · 18/04/2018 13:34

My eldest DD has Hydrocephalus @amyeddie

She does also have some other issues, but I was very unwell when I was pg with her so they may well be nothing to do with her Hydro. I have never looked into it tbh, we just got on with things. I know of other children who also have it, and it hasnt impacted on their lives at all. My youngest DD had a friend at school with it, and I didnt even realise until it came up in a conversation. Hydro is often linked with Spina Bifida, but she doesnt have this. My daughter has had surgery which is called an "Endoscopic Third Ventriculostomy" - She didnt have a shunt.

My DD with the Hydro is now coming up 24 yrs and is expecting my first grandchild, hence I joined this board

Original poster
amyeddie · 18/04/2018 14:57

thanks mik123 for your message.... they told me all this ask if i wanted to end my pregnacy, she is so perfect....then said there a chance she be fine... so enjoy your pregnancy, they must be joking all i can do is cry....

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Original poster
amyeddie · 18/04/2018 15:03

Sushirolls thanks for message sorry to here about that, im glad she having a good life, that all i want for my little girls, did they pick anything up on your scan with her.

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lalaloopyhead · 18/04/2018 15:05

My dd has a friend (who is also a twin) with Hydrocephalus and she is absolutely fine. She has had a few health issues in her life but is a very sporty and intelligent 16 year old now.

I am assuming you will be having further monitoring of the situation, hopefully they will be able to give you more information and reassurance next time.

Sushirolls · 18/04/2018 15:33

@amyeddie No, they didnt pick anything up on scans regarding this. I had a LOT of scans due to other issues and they didnt notice at all.

I had a placental abruption and my DD had IUGR due to this, so I had her early as she stopped growing. She also had a lot of MRI scans growing up as she had epilepsy and again, they didn`t realise. She was finally dx just before she was 7 x

MacNcheese87 · 18/04/2018 15:56

I have a child with hydrocephalus. 10 years old now and, although there are a few issues, he's happy, walking, talking and very sociable. Other than a slightly larger head, which is less obvious as the years go by, you'd never know. He had a shunt put in as a baby, and his development was delayed- but he's caught up now.

I also know lots of other children with hydrocephalus, they're all pretty amazing.

I suspect your consultant will want to deliver your babies earlier to give your little girl the best chance for her brain to heal after birth. Hydrocephalus is treated quite easily but they cannot treat it until she's born. You should anticipate staying in hospital with her for a few weeks while they drain the fluid, even more so if she's born early.

At 28 weeks, I don't think I could consider termination, especially for a condition that my son has lived with for a decade. That's my opinion as a mother of a thriving hydrocephalus child. I am not a neurosurgeon, I don't know your case. You may do your research and think differently, that's totally up to you, I thought I'd share my story.

It's not easy, but it's not the end. X

Original poster
amyeddie · 18/04/2018 16:33

thank you everyone, having your message make me feel more calm.
i love her so much i want her to be so happy,i got mri next week, and had bloods so hopefully no some more in couple weeks, i thinking her her head maybe getting squash as she got her sister in there to, so maybe it putting pressure her.

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MacNcheese87 · 18/04/2018 17:33

Feel free to come back whenever if you have any questions. The worry with fluid on the brain before birth is that the babies are not ready to be born yet, they need extra time to develop, but that extra developing time also means more time for the fluid to build up. The more fluid, the more pressure on the brain. So I suspect you will have a lot of scans over the next few weeks, and it's likely you'll have a c-section. The baby's head will probably appear larger at birth and you'll get to know that tape measure like the back of your hand.

Just trying to give you an idea of what lies ahead in the not so distant future. It's strange to be suddenly thrown into a medical situation and it must be such a worrying time for you.

No one can tell you what the future holds for your little girl, but the doctors will try their best to explain the scans and results to you.

Original poster
amyeddie · 15/05/2018 21:13

hi, just a update, so previously i had bloods done and they all can back find, and had mri done and results today said everything fine apart from the fliud on rightside, so they don't no why, said they just got to wait till she born,,, i hoping the fliud will go when born xxxx

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MacNcheese87 · 15/05/2018 22:03

She will be in the best hands, she has a team of doctors watching her even before she is born.

My little boy had it on his left side. It did take him a bit longer than everyone else to do stuff, but he's doing everything and more now. Just be prepared to be in hospital for a little while if they need to drain it and if she needs a shunt.

You can do this. We've got your back 😊

Original poster
amyeddie · 15/05/2018 22:10

thank you hun xxxx

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