21 month old (born at 32 wks) diagnosed with enlarged brain ventricles

My son was born at 32 weeks and was diagnosed with a grade 1 IVH bleed in the NICU.  I was told not to worry as this would likely resolve itself.  He has always been on the high percentage (95-99%) for head size so his pediatrician has monitored it every month.  He had some delay with gross motor and is in EI.  He started walking at 17.5 months (he’s now 21 months).  He has also been followed by the development clinic at the Children’s Hospital.  After his last visit the neurologist chose to go ahead and have an MRI done since his head is still on the large side.  The results came back that he has enlarged ventricles likely from the IVH.  They said he does not show signs of hydrocephalus, but wants him followed by a neurosurgeon just in case.  I am now totally freaked out.  EI is ready to close his file because they think he has caught up to most milestones, but now with this turn of events I don’t know what to think.  He seems to be adding skills and words every week so I did not expect the MRI to show any concerns.  Has anyone had experience with enlarged ventricles, but not hydrocephalus?  Thank you for any thoughts or experiences you can share.

3 Replies

  • Hello there,

    My daughter, born at 25 weeks and had a grade 3 bleed (resolved after 4 months). Today she's 13 years old and is doing well. She too has enlarged ventricles (as of her last MRI that was done almost 7 years ago). We were also told it was likely a result of the bleed but that it likely has no impact on her.

    Its great that your son is progressing and doing so well today. Try not to worry. If he's meeting milestones that's all you can ask for. Its great that his neuro wants to follow him so it's very likely that if he begins to struggle you will have a doc already on top of things and you can begin therapy services again as needed.

    All the best to you and your son!

  • In reply to Hunter and Randi's Mom:

    Are they talking about Fetal Ventriculomegaly?  I would continue to follow up with the neurosurgeons, but since he is hitting milestones I think it could possible be a mild case?  Are the physicians concerned? I look forward to hearing updates and wish you lots of love on your journey!  

  • I am sorry that your son received this diagnosis. I'm glad to hear that he is making good progress with this milestones. I hope the neurosurgeon is able to give you some more insight into what is going on.  I have not dealt with enlarged ventricles, but I'm going to see if I can did another Share momma who has.  I will be keeping you and your son in my thoughts.