25Weeker, with grade 4 ventricular bleed in both sides of the brain and hydrocephalus

[Ezza]

Hey guys, i havent been on here for ages and cant come on here often due to not having a computer... But basically, while ive been away i have had my second baby, he was born at 25weeks after going into labour at 24 weeks. Its been a long ride, hes 11weeks old now and we have come so far but our journey is far from over.
Long story short he suffered a brain bleed at 2weeks old which went to a grade 4. hes had 2 subgaleal shunts and the 2nd one has been removed as he got meningitis. he is on anti bs waiting to be able to have the VP shunt fitted.
This has left him with quite severe damage to his brain and we wont know the implications of this until he grows older.
He also has grade 3 ROP in both eyes, which is being monitored atm.
They have told us he may not be out of hospital by crimbo, his due date is October 15th.
We have been to 4 differnt hospitals all over the country.

Wow, felt good to get that all out, Just saying hi really and wondering if anyone else has had any simular experience. I do love my little miracle so much. Has faught so many odds. We have been told its still not certain hes is going to make it home so we take each day as it comes and pray he will make it and grow stronger.

I wont go on anymore.... xxx

 

[AP]

Hi hun, welcome back!

Alex had ROP and ended up having laser eye surgery for it. It meant that she had to go back on a vent for a few hours (which wasn't nice to see but it was ok) and we went home the next day. She also has had a Grade 4 IVH on the left side.

She's just turned 3 corrected age now, and started pre-school nursery. She's done fantastically, her gross motor skills are almost on par with her age and it seems it is her speech that has been affected. that's only a guess though, blaming the ivh - and she has speech therapy and support for nursery.

 

[25weeker]

Hi

What a wee fighter you have.

My daughter had a grade IV IVH on her left side. She is now nearly 33 months and is developing well. While we were in the neonatal her wee incubator neighbour had also a grade IV and he needed a shunt put in. They were told that lots of his brain was damaged on one side. He has mild CP but started walking around 2 and he is extremely bright and his vocabulary is amazing. He was in last month to get his shunt removed.

Keep us updated on his progress whenever you can xx

 

[Angelinheaven]

I am 28 weeks pregnant. This week we had been told that our baby girl has got excessive fluid on her brain. The fluid was discovered 2 weeks ago and was very little but in 2 weeks it has gone up very very high. Now it is 15ml on both sides of the brain. Doctors have told us that when fluid is more than 12ml, there are more chances of disabilities and complications. Our next step is to do an MRI in Queen Charlotte’s hospital (it s where they sent us). Some doctors think that there is a part of the brain missing. Will get more info from the fetal MRI. We feel so devestated as we really dont know what decisions to take. We have the following options:
1.Have an injection to help baby’s kidneys mature and then have early birth. 2.Let nature take its course.3.Termination
Is it fair for the baby to come into this world and live in HELL?
If we let nature take its course, there is a risk of a lot more complications as fluid will continue increasing and cause damage on brain.
PLEASE HELP

 

[25weeker]

I am 28 weeks pregnant. This week we had been told that our baby girl has got excessive fluid on her brain. The fluid was discovered 2 weeks ago and was very little but in 2 weeks it has gone up very very high. Now it is 15ml on both sides of the brain. Doctors have told us that when fluid is more than 12ml, there are more chances of disabilities and complications. Our next step is to do an MRI in Queen Charlotte’s hospital (it s where they sent us). Some doctors think that there is a part of the brain missing. Will get more info from the fetal MRI. We feel so devestated as we really dont know what decisions to take. We have the following options:
1.Have an injection to help baby’s kidneys mature and then have early birth. 2.Let nature take its course.3.Termination
Is it fair for the baby to come into this world and live in HELL?
If we let nature take its course, there is a risk of a lot more complications as fluid will continue increasing and cause damage on brain.
PLEASE HELP

I am sorry you have been given such devastating news. Sorry cant really advise as never been through it but I think after you have had the MRI to speak to the consultant and ask them what they think for the best.

Good luck xx

 

[toothfairyx]

Sending everyone who needs one a hug xx

 

[Angelinheaven]

Can someone please help me understand this report? I am so anxious and feel nervous. I need someone to talk to me. Please help me. I know that some ladies have been through this and can give me some support.


MRI Foetus

The patient is 29 weeks gestation at the time of scanning. The foetus was very active and we did not obtain ideal sequences however there is evidence of significant hydrocephalous with marked dilatation of both lateral ventricles.
The third ventricle is not prominent. The fourth ventricle and posterior fossa and cranio-cervical junction all appear normal. Atrial diameter was 23.8mms Although I cannot definitively identify the corpus callosum the morphology of the ventricles is not suggestive of callosal agenesis. There does seem to be a septum pellucidum visible anteriorly but I cannot definitively identify it more dorsally. No evidence of any mass lesion.
The brain appears immature for 29 weeks with a sulcation pattern more compatible with approximately 26-27 weeks gestation. No definite cortical abnormality although assessment was limited by the degree of foetal movement. Overall there is evidence of significant lateral ventricular dilatation. Although the third ventricle is not obviously dilated an aqueduct stenosis remains a possibility. There sulcation pattern appears immature.

 

[Angelinheaven]

please help - which is the best hospital in London for foetuses diagnosed with ventriculomegaly or hydrocephalus please? i am realllly lost!!!

 

[Ezza]

Update- Tyler passed away today, at 5months old. It was a sudden death, just stopped breathing. My little angel had enough of fighting and left the world after 2hours of doctors fighting for him. I dont really know what else to say right now, sorry if it sounds blunt. x

 

[hopingfor4]

I am so sorry hun.

 

[Srrme]

I am so very sorry. RIP little one.

 

[Springflower]

I'm so sorry ezza. It's so heartbreaking. Lots and lots of love to you and your family.

We lost our little girl this February. If you ever want to chat or vent I'm here.

xxx

 

[Cheska]

I'm so sorry to read you've lost your baby boy. It's simply heartbreaking. My thoughts are with you and your family xxxx

 

[AP]

Ezra, I am so sorry for your loss x x

 

[fluffyblue]

Im so sorry just saw your story on the loss section.

There are no words to say I just hope you and your family are ok xx

God bless lil man fly high with the angels you are at peace now xxx

 

[25weeker]

I am so sorry for the loss of your brave little boy xx

 

[bumpsmum]

What a brave wee fighter RIP little man, so very sorry for you loss xx

 

[Jembug]

Just come across your post, I am so sorry for your loss, so devastating. Xxx