An Uncertain Diagnosis: Ventriculomegaly

It all started last Wednesday. We went to the doctor for our 20 week ultrasound. The dreaded ultrasound that tells you any possible problem that could go wrong with your baby. The doctor does the ultrasound for 2 minutes before finding a spot in the brain he didn't like. He said that he thought he was just being paranoid but that he was going to send us over to Duke Perinatal to get a better ultrasound just for the "1% chance that it's what I hope it's not" (Doctor's words). 

That 1% chance didn't calm me at all. I've always felt my entire life that I was going to have a child with special needs. So when we waited the day and a half to get our second ultrasound, I didn't have high hopes that the prognosis was going to change, and it didn't. The ultrasound tech at Duke found the same spot our first doctor did. She then went to get the specialist that was going to be working with us and he explained to us that our baby does in fact have Ventriculomegaly. This means that one of the ventricles in our babies brain is slightly enlarged which will allow excess water to pool in the brain which can result in permanent brain damage. The good news is that our baby could also just have naturally larger ventricles and she could just be normal and fine. The ventricles could also shrink before birth, and she would also be fine. But there is a risk of her also being severely handicapped so this diagnosis is so vague and we really won't know more until the pregnancy progresses and until after delivery. 

I received an amniocentesis on Friday to see if there were any genetic/chromosomal reasons for as to why this happened. We won't get the results for up to 10 business days, but will be sure to update when we learn more. The good news is that the baby looked 100% normal, fine, and healthy on the ultrasound except for the one ventricle in her brain which indicates to the dr that this isn't a chromosomal abnormality, which makes for a better prognosis looking forward for a positive mental development of our baby. 

For numbers sake, so you know where we're at, the normal range for brain ventricles is 4-8mm. The upper limit of what they will accept as normal is 10mm. We're at 13mm. I've read since being home that 12mm and under has an excellent prognosis for normal cognitive development after birth. We're only 1mm away from that! Such good news right? So if everything stays the same so far, and doesn't worsen through the pregnancy, or if the ventricle luckily shrunk down just 1mm, we would be in the excellent territory! 

On the other side of the spectrum, ventriculomegaly can progress into hydrocephalus, which would require an MRI and shunting at birth (shunting still may be required if it doesn't progress into hydro as well..) to reduce the water levels in the brain and then from there, the outlook for hydrocephalus is well... not as promising. 60% chance at best for normal cognitive development at that point. Which yes, is above average, but not good enough when your talking about your child's entire livelihood. 

The good news is that there is nothing that I could have done differently to prevent this. It's a random occurrence as of now, until we get the results from the amniocentesis and if they state differently, than it's not a random occurance, but still completely nothing I could have done about it.  

More good news is that as I look online for stories from other moms going through ventriculomegaly, they all basically say that they're babies did need physical therapy to help them out, but they were pretty much on track and normal by the time they were 18 months. I've tried looking for the bad cases where moms haven't been able to get their kids on track, and haven't found those stories yet. I'm hoping that if this stays as ventriculomegaly, we won't have a horror story or anything to worry about. It's really the development into Hydrocephalus that scares me, I don't want that, at all. 

The worst part is just that we're in a huge waiting game. We have to wait a few months just to see the baby and get a better idea of what we're looking at. We're most likely not going to be able to tell the baby's cognitive ability just by looking at it, so we're going to have to wait at home for a few months to see if they're hitting those developmental milestones to know whether they're on track or not. 

It's easy to say, "why us". In the last 24 hours I've gone back and forth from being upbeat and positive, to crying, to grieving the possible life this baby may not have, and then back to positive again. And that's just probably how this entire thing is going to play out over the next few months. The biggest thing that we need to do though is just have faith that everything is going to work out. We need to have faith that the ventricles will either get smaller or stay the same. We need to have faith that we can handle this. Faith is the only constant we have right now. 

5 comments

  1. This baby is so lucky to have you and Derek for parents! :)

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  2. How stressful! Like you said, that waiting game will be so hard. But its the not knowing that really helps strengthen our faith. You are such a positive example to us all. I'll keep you and Derek and Kyle in my prayers! (And sister.)

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  3. This is beautifully written! You have so much love and support behind your little family! We are praying for you and know your little one will be perfect no matter what! Thank you for sharing your story and your faith!

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  4. i will always pray for you and your baby's best! everything will be fine, trust God bcs he has the best plan and pray everyday *hugsss* <3

    Letters To Juliet

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  5. Sending lots of thoughts & prayers to you & baby.

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