Seizures and Grade 3 bleed on brain - intraventricular haemorrhage

[LouisaM100]

Hi all,

I gave birth to a beautiful big boy at 37 weeks and 5 days old, spontaneous labour and delivery, 9.4lbs baby delivered vaginally...

He started having seizures around 24 hours after birth, changed colour and had to be rushed to Nicu. They found that he has a grade 3 bleed in the brain, meaning one of the ventricles is full of blood.

Doctors are baffled because he has no other signs of infection, everything else seems fine with him apart from the bleed. We were told this sort of thing doesn't happen to babies that are born at term.

I know he's not considered premature but I thought I will ask here because it's very common in premature babies.

Has anyone experienced this before? If so, how long did you spend in nicu?

As you can imagine my husband and I are very worried and overwhelmed with it all. I feel like I'm living a double life as we have 3 other young kids, aged 6,4 and 2 whom all keep asking where the new baby is and why he isn't home.

Not experienced this but I had a preterm and a micro-sized term baby. I can recommend the charity BLISS. They offer support to parents of fullterm babies who need NNICU or SCBU levels of care around birth. They have some free to access leaflets you can read on their website that might be useful if you feel able to read.
Hope all goes well for beautiful little boy. Just take it as each hour comes and be as kind and gentle with yourselves as you can be. Its pretty scary to have a fullterm who needs a lot of extra help when everything had looked to be going well.

Just wanted to reply even though this was a while ago. My daughter had exactly this, 42 weeks grade 3 one side and grade 4 the other side following a seizure. I hope you little one is doing well. Mine is now 4 and a half and no issues (even though the prognosis was cognitive delays), hope that helps. I couldn’t find any threads or outcomes on it when it happened to us!

I wondered how things are for you guys? My sister is going through hell with her 3 week old full term baby who also has a bleed on the brain. Desperately looking for good news stories

Hi my dear,

I hope all is well with your niece/ nephew.

It was a bumpy ride for us. We left nicu after 21 days...felt like a year. Our son came home for 9 days before being readmitted to the children's ward as his brain scans were showing increased pressure on the brain, as his ventricles kept enlarging. He did his first subgaleal shunt operation at 4 weeks old.

We returned home and 10 days later we went back to a&e as he kept having seizures due to catching chicken pox from his siblings. The chickenpox turned in to encephalitis and obviously irritated his brain and spinal cord. We spent another month in hospital on iv medication. Throughout that month, we realised there was an issue with his temporary shunt and it was confirmed that his ventricles were still enlarged so he was transferred to another hospital to do his VP shunt.

Thankfully since May 2022, we have not spent a night in hospital again.

There were lots of follow up appointments with his neurosurgeon, neurologist, opthalmologist, physiotherapist etc and thankfully they discharged us 1 by 1.

He is now 2 yrs old and anyone that doesn't know him, almost do not believe me when I talk about his life in the beginning...there is absolutely nothing wrong with him at all. No balance issues, no eyesight issues, no communication issues, nothing. All his health professionals are astonished by his development.

In fact, he spoke before all his 3 other siblings did and he is bi lingual! If someone had told me whilst I was in nicu that this would be his outcome, I would have never believed them.

Of course everyone's development is different and some are not as lucky as us but it's important to remain hopeful and take it 1 day at a time. I truly believe early intervention is very important and we did indeed work harder with him than we did with the others.

Like some previous posters have commented, Bliss is a good charity to help parents with unwell babies. We met many parents whilst we were in nicu and we have made friends for life with them, we make sure we gather for birthdays and special occasions. They can understand you like no others could.

I hope all goes well with your family. Feel free to DM if you have any questions or anything xx

I forgot to mention in the main post as we have now been informed, our son had a stroke during or just after birth and no one knew until he started changing colour, sweating water from his head and almost holding his breath. This stroke caused a vessel in his brain to burst and he had a grade 3 haemorrhage on one side and grade 4 on the other. He was medicated with seizure medication for over a year before being weaned off.