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We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
Intraventricular Hemorrhage, Hydrocephalus, and Cerebral Atrophy
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jacob5604 posted:
My daughter has been diagnosed with several things. I'm looking for any insight on what I can expect for her going forward. Here's a chronological summary of her medical history:

  • 16 week (gestational age of my daughter) OBGYN appointment: My wife was diagnosed with gestational diabetes (borderline case; treated with diet control and no medication).
  • 22 week sonogram: My daughter looked totally healthy.
  • 36 week sonogram: My wife was diagnosed with polyhydramnios (excess fluid).
  • 37 week sonogram: Because of the polyhydramnios, we saw a parinatologist who noticed that my daughter has hydrocephalus. On the same day, my wife had a scan that showed a blood clot in her leg (which we think is unrelated to the hydrocephalus).
  • Between weeks 37 and 38: My wife was on bed rest in the hospital with a herapin drip to treat the blood clot.
  • 38 week sonogram (performed 1 day before birth): The fluid in my dauther's brain didn't appear to have increased. Her cerebellum looked totally normal.
  • Week 38: My beautiful daughter was born (planned c-section because of the hydrocephalus), weighing 9lbs 12oz, head circumference at 38.5 cm, length at 21 inches.
  • Day 1: An ultrasound was performed on her head: it confirmed the hydrocephalus.
  • Day 4: Ultrasound showed that fluid in brain was not increasing; head circumference decreased to 37 cm.
  • Day 10: MRI showed that the hydrocephalus was caused by an intraventricular hemorrhage. As a result of the hydrocephalus and/or the hemorrhage, my daughter has cerebral atrophy. The atrophy is not "severe" (but I don't know if it's mild, moderate, or other). The atrophy is "general," meaning it affects the whole brain, rather than just part of it. Head circumference was 37 cm. Weight was 9lbs.
  • Week 3 (pediatrician measurements): Head circumference is 37 cm; weight is 9lbs 13oz, and length is 22in.
  • Week 4: Today is my daughter's 4 week birthday. She breast feeds and eats well and often. If it weren't for all the scans, no one would have any idea that anything is wrong. I won't waste any time trying to list everthing that appears normal. It suffices to say that everything appears totally normal.
The neurolosurgeon scheduled us for a more detailed MRI in late November (it'll take about 10 times as many images as the first MRI). He wouldn't give us much idea of what to expect for the rest of our daughter's life (because he doesn't know). He did tell us to prepare for some special needs (as though it was a possibility, rather than a certainty).

Here are my questions:
  • Cerebral atrophy is a loss of brain volume; will her brain always be smaller than normal? If so, what are the consequences?
  • Any idea of what I can expect going forward? Any idea of percentages of falling into one group or another?
  • Any suggestions on books, articles, or any credible sources to read to get a better grasp of this?
  • Any personal experiences?
Reply
 
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lifes responded:
Dear Jacob,

Congrats on a beautiful baby girl ! I'm sorry your baby and wife experienced complications but glad they were both under treatment throughout. But still you must be a proud Daddy!

Here are a couple tools to help you track percentiles:
Interactive Head Circumference and Age
http://www.infantchart.com/infantheadage.php
NOTE: Make sure to change birth date and the year-it is stuck on 2011 but use the tiny arrow to make 2012.
=====
http://www.babycenter.com/0_growth-charts-understanding-the-results_5251.bc
http://www.babycenter.com/baby-child-growth-percentile-calculator
**Dr watches for overall growth of child, even if baby is in a lower percentile all along.

As you must know, an infant with generalized cerebral atrophy will likely have *some* appearances of neurodevelopmental disability, psychomotor retardation, memory loss, gait ataxia and incontinence. Which outcomes will become more apparent as your child grows. Milestones will likely be affected, so your child might have delays.

One of the most important things you can do is ask NOW about when you can have various therapies start for your child. They might wait until your child starts to crawl, but do ask about it.

Cephalies are more common in other countries, like India, Pakistan, Russia. When you do Google searches, put Journal the medical terms you are looking for. There are experts in other countries who put their writings online. But you might only find Abstracts, not full articles... With the full article citation, your Public Library might be able to request a copy of the article.

ASK here if you need help understanding medical journal articles.


This might help explain things the medical side the best.
Hydrocephalus in Children
Raza Rizvi ( Neurosurgery1 and Community Health Sciences Ziauddin Medical University, Karachi. )
Qudsia Anjum ( Departments of Family Medicine2, Ziauddin Medical University, Karachi. )
http://jpma.org.pk/full_article_text.php?article_id=956
(same article: http://jpma.org.pk/PdfDownload/956.pdf )

http://thamburaj.com/hydrocephalus.htm

(Discussion of worst type [not in your baby> and discussion of shunting procedure: http://www.panarabneurosurgery.org.sa/journal/vol4_2/HeadInjury/JournalVol4_2_HeadInjury.htm )

Am J Obstet Gynecol. 1997 Sep;177(3):512-8.
Perinatal ultrasonography and magnetic resonance imaging findings in congenital hydrocephalus associated with fetal intraventricular hemorrhage.
Fusch C, Ozdoba C, Kuhn P, D?rig P, Remonda L, M?ller C, Kaiser G, Schroth G, Moessinger AC.
SourceDivision of Neonatology, University Womens Hospital, Bern, Switzerland
http://w3.cns.org/university/pediatrics/ch3.html
Long list of publications: http://www.weillcornell.org/fachervenak/publications.html

See next post
 
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lifes replied to lifes's response:
I said in my first post, babies and children with cerebral atrophy might have neurodevelopmental disability, psychomotor retardation, memory loss, gait ataxia and incontinence. The problem with the brain (generally speaking) is that it is so complex, docs cannot predict exactly what deficits a child or adult will have. They often wait to see what is shown clinically-- what problems the child shows as she grows.

What do those categories mean though?

Your child could have:
motor delays
cognitive delays
difficulties crawling, standing, walking, balancing upright
difficulties or delayed speech
difficulties or delayed toilet training
difficulties or delays with cognitive learning
resulting special needs in school

Though these are hard to hear, I'm saying it so you can prepare for what you, your wife, and child will need. Many children are "special needs" BUT they thrive with loving parents who believe in them. Your child may have difficulties BUT she will still be precious and *your* child. And they have many therapies to help her reach her maximum potentials.

Ask about--
Is there a blockage for cerebral spinal fluid CFS or is it re-absorbing on its own?
What "grade" or "severity" has been assigned, and what that assignment means clinically?
How often should dr do brain scans through infancy and toddler years?
The possibility of cerebral palsy or other potential brain conditions.

Some other journal sites I found (but you'll need to look around to see what the websites have) are:



The bifrontal index was taken as the best parameter for measuring central atrophy, and the width of the sylvian fissure was used as the parameter for cortical atrophy.
--http://www.ajnr.org/content/4/3/434.abstract

http://www.sciencedirect.com/science/article/pii/S0002937897701388
http://www.einstein.yu.edu/
http://www.einstein.yu.edu/faculty/5311/joseph-maytal/ -- right now a "not found" but recheck after storm over

http://www.fetalsono.com/teachfiles/Hydrocep.lasso (detailed medical discussion)

I'd also look on YouTube or Parent Forums to see if other parents have videoed or written about their experiences. Network online with other parents. You coud even start an email group--- or group like this one on WebMD. But DO get in touch with other parents so you can hear the joys, frustrations, and tips from other people.

We aren't doctors on this Forum. So I can't help further. But we can listen and help you research information. Do write back to let us know how things are going.

Lifes


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