Cyst on baby's brain on ultrasound
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Cyst on baby's brain on ultrasound
July 2002
I would love to hear the good AND bad on this one. Everything
and anything you can offer!! FYI-this is our first baby.
On our 18 week ultrasound, the doctor diagnosed a single cyst on
the baby's brain (choroid plexus cyst). My bloodwork was
phenomonally GOOD - 1 in 10,000 chance for Trisomy 18 and 1 in
750 for Down's. We are 27 and 28, and neither of our families
have histories of major medical problems. After meeting with a
genetic counselor and reviewing this with 3 different doctors in
my practice, we decided NOT to have an amnio. In fact, we were
even told that the cyst is NOT anything to worry about, and that
our pediatrician (when we picked one) won't even care.
Now I'm about 8 months pregnant, and we've met with a
pediatrician that we like. BUT...it turns out that the cyst is
a worry. It doesn't seem so much from her perspective as
a ''birth defect worry'', but more of ''what is this cyst on the
brain and how will it impact our baby's life?'' She would like
to have a neurologist examine the baby and an ultrasound done as
soon as the baby is born and take it from there. Of course we
totally agree with her, but it's just hard to get fully excited
about our new baby without wondering about the what-ifs. Like,
what if this were fatal, and we were to lose our baby. It's
very to scary to know that shortly after birth, our baby will
already have specialists seeing her.
I would really appreciate hearing from other people that have
been in this situation. The good and the bad. I'm hoping to
find a little more info on what to expect. Thank you so
much!!
worried mom-to-be
Hi,
I read with so much sympathy your explanation that your doctors have
found something unusual in the ultrasounds performed for you. I wanted
to share my thoughts with you on this subject. While our child has a
completely different condition from your child's, I think I may be
able to offer some words of support and understanding that are
applicable. My daughter has an unusual heart that was not diagnosed
prior to her birth. It was an incredibly traumatic discovery that was
made minutes after she was born, and led to our having a harrowing day
and subsequent week in the hospital while they did tests and monitored
her. What I am trying to say is that, while it may be a very
frightening wait until the time your baby is born, try to take
strength from the prior knowledge you have. This way you have time to
gently explore (and potentially start facing down) all of the
different potential outcomes of your child's condition. I know, it
doesn't sound like much of a comfort, but I wanted to put out there
that there is something to be said for having advance warning that
there will be some testing and specialist visits in your child's (and
your) immediate future. You can try to prepare, you can gather
information, and you can inform those around you that you will be
needing more support, encouragement, and understanding than you ! ev!
er thought you would ask for from your friends and family. The other
VERY important thing I wanted to say is to try not to focus on the
negative possibilities, as tempting as it is. I was told on the day my
daughter was born that she would need open heart surgery by her second
birthday. I spent the next eight months thinking that my daughter
would not survive, I became hypervigilant with her and watched her
every move--in short, I couldn't allow myself to consider that things
might not be so bad after all. Essentially, the only scenario I could
envision was the worst possible one simply because I felt I couldn't
bear to believe she would be okay only to have something terrible
happen...Gradually, however, I opened up to the possibility that maybe
things wouldn't turn out so bad--and I started living my life
again...and now my daughter is three and a half years old, is symptom
free, and they are now saying she might not need surgery until she is
five or older. In other words, we have had a lot of time together and
done a lot of livin! g ! together without surgery or other
interventions. Good things can happen, even when you fear the worst.
These are the two pieces of knowledge I have gained that I so much
wish I had assimilated prior to the birth of my daughter, and that I
hope will help you during this harrowing time. If you would like to
dialogue further about navigating the hospital with a child in the
neonatal intensive care unit or any other aspect, please feel free to
email me.
Good luck.
Elizabeth
My youngest son (of three) had this, too. I opted for an amnio
at that time.
The doctors told me that the cyst is usually dissolving while
the baby is still in utero. They also told me that they are
seeing more of those cysts these days (also in other organs)
and they attributed it to better ultrasounds (that was 1995,
btw.).
After my son was born, a doctor from my pedriatic group (not my
regular doctor) checked him out, and I reminded her about the
cyst. She ordered an ultrasound which was taken before we left
the hospital. I went with my son and held him while they moved
this u/s-wand over his fontanelle. It wasn't a big deal at all.
The cyst was still there and I was somewhat worried. At that
point my pediatrician (Dr. Cuthbertson from Berkeley
Pediatrics) talked to a neurologist (I think) and then told me
to have another u/s when my son was 6 months old. It also
helped that my son was an extremely easy and happy baby and I
knew he wasn't in any pain, and since he was my third I was
also quite experienced and knew of all ''normal'' newborn
behaviour.
For his 6month u/s we went to Children's Hospital. They could
barely perform the procedure because his fontanelle was on it's
way to closing. The cyst was still there but smaller, and
that's when the pediatrician decided not to worry about it
anymore - especially since the child didn't develop any other
symptoms.
Around the same time a friend of mine went through the same
thing. She decided against an amnio and has a healthy 6-year
old daughter today. She had an u/s shortly before giving birth
which didn't show the cyst anymore! If she hadn't had an u/s at
20 weeks nobody would have suspected anything! Go figure.
Good luck!
Susanne
This is in response to the worried mom-to-be whose baby was seen
to have a choroid plexus cyst during the 18 week ultrasound. My
husband and I had this experience as well. We now have a healthy
five year old son.
Because I was 40 when my son was born I had already planned to
have amnio. We had some very anxious days waiting for the amnio
results. Happily, they were normal. My doctor then did a follow up
ultrasound. (This was about six weeks after the amnio, I believe.)
The ultrasound indicated that the cyst had resolved itself. We had
another ultrasound after my son was born. Again, it showed that
the cyst had resolved itself.
My son is healthy, very bright, and well adjusted. His only
abnormality is that he has two webbed toes on each foot. This is a
characteristic that runs in my family. One of the articles that we
read about CPC had a footnote that suggested some possible
connection between CPC and webbed toes!
At the time of the first ultrasound, my husband posted on the
Harvard website: http://neuro-www.mgh.harvard.edu/neurowebforum/
ChildNeurologyMenu.html. In response to that post, he has heard
from three anxious mothers-to-be whose ultrasounds showed CPC.
Happily, all three of them have had healthy babies.
I remember the uncertainty about what the CPC really meant for my
child. He is completely fine. I trust your baby will be as well. I
am happy to answer any questions you may have. Feel free to
contact me if you want to talk.
jdelaney
My baby (now 1 year old) had 2 choroid plexus cysts on an 18
week ultrasound. My AFP results indicated extremely low risk of
any trisomy. Due to my age at the time (34) I elected to have an
amniocentesis (fortunately it was normal, but it was extremely
anxiety-provoking; I don't think I would do it again). The
genetic counselor and perinatologist advised us that if the
baby's chromosomes were normal, there would be NO need for any
follow-up of the cysts - - they typically disappear by about 24
weeks. I consulted a second perinatologist and radiologist, as
well as a pediatric neurologist, all of whom informed me that in
a baby with normal chromosomes, choroid plexus cysts usually
disappear in the 2nd-3rd trimester and it is unknown if they are
clinically important.
I would suggest speaking with the pediatric neurologist now to
find out more about potential risks in your specific case. You
may also wish to take a look at the website
www.choroidplexuscyst.org - - I found reading much of the
information there helpful and reassuring.
Congratulations on your baby!!
Julie's Mom
My husband and I are both physicians. Our second son had
a choroid plexus cyst found at early ultrasound. We asked
every perinatologist/radiologist/pediatrician we knew what
we ought to do. We did end up having an amnio (but I was
over 35 at the time anyway). The amnio was fine. The
radiologist offerred serial ultrasounds but we didn't choose
to do them (choroid plexus cysts are seen frequently, one of
those things radiologists found out once ob/gyns started
screening so many people). Our pediatrician (with years of
experience) didn't recommend further
ultrasounds/mri's/neuro evals and I agreed with her. Why
drive yourself crazy with ''what could be?'' I think your baby
will be fine. Mine is now a dynamic 4 year old who's off the
charts in most everything. If he/she has problems you'll
know it soon enough. You may drive yourself nuts in the
meantime if the cyst is still there (since there's not a darn
thing you can do about it except worry and it probably won't
interfere with his/her development at all). In the meantime
know that something can always go wrong. It probably
won't. Try not to dwell on the what if's. And try to focus on
the what is's.
kj
Boy do I feel for you! Almost the same thing happened when
I was pregnant 3 years ago with my son. At 16 weeks the
ultrasounds detected a cyroid plexus cyst and we were
thinking the worst for an hour until our more detailed
ultrasound with a specialist. The specialist literally said
''don't loose any sleep over this'' and mentioned that she
has never seen it turn into a negative outcome. We chose
not to have an amnio as well and that decisions was
supported by the genetics consultant. (we had Kaiser at the
time). So I did some research and learned that it was a
normal part of development and that the cyst should
disappear in a few weeks. But when my due date came
around, I began to worry. Not that I had a reason to because
all the exams and ultrasounds never showed anything that
alarmed anyone. Once my son came out I looked at him,
saw he was ok and never thought of it again. It happens to a
lot of people and you may have found lots of websites about
it already. I hope you can put your mind at ease. It is hard
being a first time parent and faced with all these very real
and very scary situations. One thing I learned from being a
parent so far is that all that there is so much that is out of my
control and I have to learn to not let all the ''what if's'' stress
me out. There are so many things about having a baby that
are going to be not what you expected, good and bad. From
what I have heard there is almost no reason to worry about
the chyroid plexus cyst and the doctors would have found
another marker for Trisomy if there was one. Good luck to
you!
Hadley
My son, who is now a totally smart healthy soon to be 4 year
old had choroid plexus cysts also when we had our first
ultrasound. I first found out when I got a message on my
machine a few days after out ultrasound by a doctor at Kaiser
saying your baby has cysts on its brain give the genetics
counselor a call for more information. That was it...of course
I was in tears until I talked to her, what she said is that
choroid plexus cysts are actully quite common and totally
harmless in and of itself, there are many adults walking around
with them and they cause no harm. The only reason a red flag
even goes up is because babies with trisomy 18 and Downs have a
much higer rate of having them. So we too, like you had the
level II ultrasound which was fine and the AFP test which was
normal and decided against an amnio. We decided to have another
ultrasound at 27 weeks because they said often the cysts are
totally gone by then and we were curious(though we told
ourselves if they were still there we wouldn't freak out)and
they were gone. I think your Dr. is totally uniformed and wrong
for scaring you like that, because we were told after the level
II and AFP that we had nothing to worry about, in fact they
were fine with me having a home birth so I know they had no
worries anything could be wrong at that point. Get another Dr.
or at least another opinion, try not to worry and good luck. If
you need to talk any more about it feel free to e-mail me.
bellkeating
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