High-Risk Pregnancy
lkwinter
member
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New Dx Hydrocephalus
lkwinter
member
Friends, I am in great need of support. I'm 21w 4d, anatomy scan was yesterday. Notified that my daughter (I have a daughter!) has a dilated third ventricle (trying to obtain measurements, will post when I have them) and have been referred by my midwife to specialty care. I was told the next step would be a better ultrasound and a consultation. What makes the better ultrasound "better"?
My heart aches for my little one, and I keep tumbling into a dark hole of worries, frustration, grief and anxiety. Mostly I'd love some good vibes coming our way these next few weeks, and any advice fellow mamas have with this. Thank you!
My heart aches for my little one, and I keep tumbling into a dark hole of worries, frustration, grief and anxiety. Mostly I'd love some good vibes coming our way these next few weeks, and any advice fellow mamas have with this. Thank you!
Re: New Dx Hydrocephalus
My son was a 29wk preemie and had IVH (intraventricular hemorrhage) grade 3 (bleed in the ventricle) which developed into hydrocephalus within 7-14 days after his birth. His fluid did not decrease or revolve on its own so he had to go in for shunt surgery at 32wks gestation. His brain was not under pressure and he does not have white matter damage so he has no lasting effects from being a hydro warrior. Minus the scar (which his hair covers) and small bump on his head from the shunt reservoir, you would never know he was a hydro kiddo. He will probably have his shunt for his entire life, but for the most part, he can do anything every other kid can do. I will probably steer clear of football and I think roller coasters or anything where you are upside down are a no no, but other than that... his neurosurgeon said, he can do whatever he pleases. Shunts do have high complication rates- usually infection or blockage. Sometimes surgeons have to go in and repeat the surgery for other reasons like the shunt location- but that is not as common.
Depending on what type of ultrasound you had to diagnose the hydro, you might be sent to an MFM or specialist for a level 2 u/s. An MRI might also be ordered. The brain is very complex and it is very hard to determine where/why the problem began but they will monitor your little girls ventricle measurements to see if it remains the same, increases or resolves. Basically what is happening is the cerebral spinal fluid that flows freely through the ventricles coating brain, spine and body is getting backed up in the ventricle due to a malformation of a drainage duct, blockage, hemorrhage or other. Babies are incredibly resilient and the brain is still going through to many changes especially after birth so even if the hydro is present at birth the main thing the doctors do not want is for the ventricle to enlarge to a point of putting pressure on brain matter. If your daughters condition does not resolve or worsens, I do not know if or how early they would suggest to deliver nor do I know if early delivery with intervention is more helpful than pushing for late preterm or early full term delivery, but early delivery might be discussed.
Try not to read too many stories online about hydro or shunts because they will just scare the shit out of you. There are complications that can occur from a child having hydrocephalus and the doctors will probably be frank about all of them. They will also explain what your child might look like if the hydro remains or worsens by the time you deliver or after the baby is born. Some hydro kids have enlarged heads, or large foreheads but a lot of that is due to the ventricles being so enlarged that it pushes the brain matter out towards the skull. As I said, your doctors and neuro consult are on the defense to not have that happen. Take things one day at a time and remember that all you can do is be patient, supportive and love your child no matter what. I was terrified and never prayed so hard in my life. I was scared for my sons life, his future, the affects of surgery on a preemie, possible infection, future shunt surgeries, the list goes on. Trust me when I say, it all gets better and it all works out. They are amazing little warriors! Message if you want to chat some more.
Hi
I have the same situation at week 20. Enlarged third ventricle while everything else looks normal. I couldn't find a doctor that saw it before and can tell me what to expect and what it means.
Can you please let me know what to expect from your experience? yafitr@gmail.com
Thank youFaf
yafitr@gmail.com
Hi
I have the same situation at week 20. Enlarged third ventricle while everything else looks normal. I couldn't find a doctor that saw it before and can tell me what to expect and what it means.
Can you please let me know what to expect from your experience?