5% chance of hydrocephalus

[ChunkyNicksChunkyMom]

Went for level 2 ultrasound today to assess my low lying placenta, which is self-correcting.( Just like most of you smart woman told me it would!). The doctor took a measurement that showed very slightly more fluid around the brain than normal ( if normal is 1.0 we were at 1.02). I am at 27 weeks almost and the doctor said that if I was having a child with severe hyrdocephalus something would have shown as abnormal on my previous ultrasounds and also that a reading of 1.02 indicates only around a 5% chance of actual hydrocephalus. In most of these cases a shunt can be used at birth to remove the excess fluid with no ill effects. So why do I feel so scared? My husband is out of town and unreachable and I can not share any potentially scary news with my mother as she totally freaks out. Does anyone have any experience with mild hydrocephalus that they could share with me? I do not want to google this and start freaking out.



Susan

#1 Nick 11-18-04
#2 ETA 05-22-06

[TaChapm]

No advice here but you are in my thoughts. I am sure everything will be fine but it can be so scary to have to deal with things like this. Hugs Mama!

Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05
OMG!!! Baby #3 Due September 5, 2006!

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[ribbit1019]

Hugs Susan! At least it seems that your baby girl has a low chance of having hyrdocephalus.

I won't google it either, way more than you want to know is likely to come up.

Christy
Maddy born 6/09/04
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Little Man due 3/02/06
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Co-Owner Ribbit Baby

Frogs are lucky, they eat what bugs them.

[MrsZaz]

My youngest has benign hydrocephalus and he is 17 months old. Nothing was noticed while I was pregnant but was diagnosed after I gave birth. His head circumference went off the charts for a while but is fortunately back on now. He had quite a growth spurt there for a while. He has a large head (as do I) but it suits him KWIM? You would not be able to tell that anything is wrong. He has hit all of his milestones either on target or ahead of schedule. The Dr.s have told us not to worry - he'll be fine.

I know it's not the identical situation as yours but thought I'd share.


Colleen

[Lynnie]

You feel scared because you are a concerned mommy, and that's what most of us do, even if the odds are huge that everything will be fine. I think we all do that, and will do that to some degree forever.

I would agree not to google it, I made that mistake when the ped told me that DS2 had a sacral dimple, and I about had a heart attack after reading everything about it, thinking it was the worst kind, when it is really not bad at all. But, I would want to monitor things closely with your doc, then hopefully you'll feel more at east when the evidence continues to point to everything being ok.

Hugs

[starrynight]

I'm thinking of you and sending prayers.

I would not google, I've freaked myself out a few times doing that. Usually only the worst cases make it to google and you have no comparison to base the normal/benign cases to and you scare yourself.

[brittone2]

Well, I'm sure it is scary hearing that information but at the same time, there's a 95% chance (or better!) that your child will be born without hydrocephalus.

Not to minimize it, but hydrocephalus is treatable and many many kids go on to be perfectly fine with their shunts. The key is diagnosing it early, so it is good your docs are already keeping an eye out.

Hugs mama. Things will probably be just fine.

[Wife_and_mommy]

Just wanted to send hugs! I hope you're able to talk with DH soon.


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[ChunkyNicksChunkyMom]

I am having a very hard day here. I know 5% is not a great risk, unless it is your child ,KWIM? Thank you for listening.

Susan

#1 Nick 11-18-04
#2 ETA 05-22-06

[almostamom]

Susan, I do know exactly what you mean - I just wanted to send you some hugs and tell you that I'm thinking of you.


~Linda~
DS 11/9/04

[KrisM]

Try to think of the 95% chance that it is nothing! It's so hard, I know. I hope your DH is back soon.

[octmom]

((hugs))) There is a little boy in DS's daycare class who I think had hydrocephalus. I never talked with his parents about it, but one of the teachers mentioned it to me once. His head seemed a bit large when he was younger, but it hasn't for some time now and he is 26 months. He has met all milestones on track and is a very happy, healthy little boy. When he was first cruising and learning to walk, he did wear a soft helmet to protect his head in case of a tumble, but it never seemed to bother him. He hasn't worn it at all in a long time. He is an adorable little boy with a cherubic face and blond curls. He runs around and talks just like his pals.

A 5% chance is pretty low, but I understand why you are scared. I hope that everything turns out well. Also, I agree with the PPs who advised you not to google it. More (((hugs))).

Jerilyn
DS, Sean 10/03
DD is scheduled to arrive via c/s on March 21! :)

"Baby makes days shorter, nights longer, home happier, and love stronger."

[Mamma2004]

You are a loving mom and of course you are scared. *Try* to focus on that whopping 95% and know that we are all thinking of you.

Wishing you all the best!

Stephanie

[brittone2]

Oh yes...totally agree. When it is your kid 5% seems like a huge and scary number I'm sure.

Thinking of you and sending hugs your way.

[dogmom]

I'm assumming there are doing repeat ultrasounds later. Often the "abnormal" ventricle size, which indicates the extra fluid, returns to "normal" in later scans. Probably why the doctor is giving you a 5% chance at this point. I just had my neighbor's sister go through this and after 5 weeks of complete stress, thinking the absolute worste case, everything resolved.

I would be freaking also, and this is my specialty area, I think that is a normal reaction because you have no control. Even with 5% chance hydrocephalus is VERY treatable. If you do break down Google it, remember, most of those sites deal with kids who have hydrocephalus secondary to something else, so don't freak out. If you even get to the point of needing more information on the subject feel free to email me and I can send you links to some very good, non-scary sites for reliable information.

This is why I never let my DH out of contact during my pregnancies! How scary this is happening when you can't get hold of him. And I feel bad for him because he is probably going to feel bad when you do talk to him.


Jeanne
Mom to Harvey
1/16/03
& Eve
EDC 6/18/06

[buddyleebaby]

Hugs to you, mama.

[ChunkyNicksChunkyMom]

The level of fluid has increased and I am going for a fetal MRI next Wed. I am beside myself.

Susan

#1 Nick 11-18-04
#2 ETA 05-22-06

[bcky2]

i am so sorry to hear this. big (((hugs))) mama and hang in there. you will be in my thoughts.

[annasmom]

Susan, I am SO sorry that you are going through this. You and your dear baby will be in my thoughts and prayers!

[JElaineB]

I'm so sorry. {{hugs}}

Jennifer
mom to Jacob 9/27/02

[tarynsmum]

We'll be thinking about you and keeping you guys in our prayers! Keep positive thoughts; let us know what happens.

~Heather

[tarynsmum]

We'll be thinking about you and keeping you guys in our prayers! Keep positive thoughts; let us know what happens.

(((HUGS)))

~Heather

[tarabenet]

Susan, my thoughts and prayers are with you too. I'm sure Wednesday sounds like forever away. Hugs.

Benet

[almostamom]

Oh Susan, I'm so sorry. I know this is so scary for you. I'm thinking of you. We will say a prayer for you and your sweet little one. In the meantime, I'm sending you lots and lots of hugs.
~Linda~
DS 11/9/04

[psophia17]

Big hugs to you, Susan. I can't imagine what you're going through.

In the meantime, good thoughts are heading your way.

[trumansmom]

Oh Susan. I'm sending all kinds of prayers and good thoughts your way. I can only imagine how worried you must be.

Jeanne
Mom to Truman 11/01 and Eleanor 4/04
Independent Consultant, Do-Re-Me & You!

[ChunkyNicksChunkyMom]

Thanks so much for responding so quickly. YOur kind words are all I have right now. I am so very sad and my husband is just not understanding why I am frightened.

Susan

#1 Nick 11-18-04
#2 ETA 05-22-06

[mudder17]

Oh, Susan, I am so sorry you're going through this. I will keep you and the little baby in my prayers. Big hugs!

Eileen

http://www.mothering.com/discussions/images/smilies/candle.gif for Leah
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[murpheyblue]

Susan, I so sorry. You and your babe are in my thoughts and prayers.

(((hugs)))

[wendmatt]

Oh Susan
I'm so sorry to hear you are going through this, I really hope it is OK. Take care of yourself, big hugs.

[brittone2]

Susan-
You'll be in my thoughts. Hopefully you'll get some answers from the testing.

We're here for you.

[jesseandgrace]

When I went through something similar with my second pregnancy I was very stressed, crying, it is hard! You are worrying about your child, but you can do this! Try to stay as relaxed as possible, I know that is easier said than done.

[chlobo]

So sorry you are going through this. I'll keep you in my thoughts until Wed.

[mcdonald29]

Susan,

I will be thinking about you and baby- please keep us posted.

A great source of *safe* but accurate information is Medlineplus -written in English (not Doctor). Hopefully it may help a little.
http://www.nlm.nih.gov/medlineplus/hydrocephalus.html

[BeachBaby]

Susan, I'm so sorry to read this. You and your family will be in my thoughts. Wishing you lots of strength for the coming days. Hang in there.

[pb&j]

Hugs, Susan. Big, big hugs.


-Ry,
mom to Emma, stillborn 11/04/04
and Max, 01/05/06

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[aliceinwonderland]

This sucks. I am senidng all sorts of good thoughts, that all this worry ends up being for nothing. :(:(

[Roleysmom]

Oh, Susan, that just stinks. I'm sorry the news wasn't better. I'll be thinking good thoughts for you and your babe.

Paula -- mom to Roley Julia, January '02

[missym]

Susan, my prayers are with you.

Missy, mom to Gwen 03/03 and Rebecca 09/05

Want a penpal for your BBB kiddo? Send an email to:
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[ribbit1019]

Susan I am so sorry. I would be scared too.
You are in my prayers, try to hang in there.

Christy
Maddy born 6/9/04
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Jarred born 3/8/06
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Co-Owner Ribbit Baby

Frogs are lucky, they eat what bugs them.

[jk3]

I'm thinking of you.

Jenn
DS 6/3/03

[thomma]

Susan-
I'm sorry you're going through this. You'll be in my thoughts and prayers.

Kim
t&e 5/03

[kozachka]

Hugs. I hope everything turns out fine. We were also scared that there could be some issues with DS brain, can't even remeber what exactly it was (too much liquid somewhere) but a repeat u/s showed that everything was fine. I am sorry to hear that your DH does not understand why you are so worried. My DH got so freaked out that I had to take care of him rather that the other way around.

Sending good thoughts your way. And please update us after the MRI.

[JBaxter]

We are sending prayers your way. Hugs to you and your family

[octmom]

Susan,

I'm so sorry you are dealing with all this worry and uncertainty. You will be in my thoughts.

Jerilyn
DS, Sean 10/03
DD, Katie 3/06

"Baby makes days shorter, nights longer, home happier, and love stronger."

[tina-t]

(((Hugs))) Hope everything turns out ok. I am sorry that you have to go through this.

[Twinsplusone]

Susan~
I am so sorry you are going through this. It is really scary when the outcome is unknown.
The only advice I have is to STAY POSITIVE. I know it is hard ot do though.

The other thing I can do is tell you my story. I will try to keep it short. I already tped it, then lost it.

At my 32 week U/S baby A was dx with a brain bleed/hydrocephalus. they monitored me until they felt it necessary to deliver without jeapordizing both babies lungs. (36 weeks). She was then at a grade III (out of 4).
Tey told me she would be transferred to another hospital where there was a pediatric neurosurgeon who could put a shunt in.
She did well when she was born. They transferred her at 2 days old. They tapped her at her birth hospital & again with the neurosurgeon.
They did NOT shunt her. They decided to monitor her.
FAST FORWARD~ within a few days of recieving vaccinations she went downhill. She ended up having surgery at 5 months old. They did NOT shunt her, but did another procedure.

FAST FORWARD~ today she is a PERFECT 3y3m old. Developmentally on track (she did have some early intervention PT).

So hold on to hope & stay positive.
If you would like to know more, let me know, but I didn't want to bog you down with info you don't want or need to know at this point.

[Melanie]

Oh Susan, I'm so sorry that you are going through ths stress. I hope all is well with baby.

[hez]

Huge, huge hugs to you, Susan. I wish I could take the scary-ness away.

[ChunkyNicksChunkyMom]

and especially Twinsplusone for your IRL experience with this.
I was so excited to get over all the age related humps and was just beginning to relax about this pregnancy. I can not help but feel I tried to press my luck after having one perfect baby which is so much more than many woman get at my age.
This would be so much easier if the high risk doctor did not rub me the wrong way so much. When I started to cry at out last appointment she was very dismissive (or at least that was how I perceived her to be). She said "I gave seen lots of cases worse than this"- well, yeah, of course you have, you are a HIGH RISK specialist. Then, "I guess I am just a glass is half-full person". I suppose I am so hypersensitive that there is no way she could have said the right thing to me- there are no right things to say, I suppose.
Thanks for all your support and for not telling me "not to worry". You ladies are the best!

Susan

#1 Nick 11-18-04
#2 ETA 05-22-06

[Ceepa]

Hugs.

Of course you're scared. When something is happening to your baby and you have to wait for additional tests it can be terrifying.

My family has had personal experience with hydrocephalus and I can tell you that there are amazing things that can be done, especially for those with congenital hydrocephalus.

Even in the case of shunting, the procedure is a relatively simple medical procedure. Please DON'T take offense at that statement -- I can't stand it when my kids even have to have blood drawn so I don't mean in any way to minimize the situation. I'm just saying that even newborns can handle the shunting procedure well.

Your family is in my thoughts.

[jayali]

Susan,

You and your baby are in my thoughts and prayers. Hang in there momma - with all of these positive vibes everything has to work out OK.

Also, don't be so down on yourself. Us older mommies are allowed to have lots of healthy and happy babies. Be proud of yourself for having more as an older mom (if you truly are older).

Lots of love and hugs.

[mudder17]

Of coure you're going to worry! It's natural to be scared for your baby right now and then have to wait for further tests. It sucks that your high risk specialist was so dismissive of your feelings. :( I guess in some ways she thought maybe she was helping. I will keep you and your baby in my prayers and look for your updates.

Big hugs!

Eileen

http://www.mothering.com/discussions/images/smilies/candle.gif for Leah
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http://tickers.baby-gaga.com/t/catcatcvi20040222_-6_Kaya+is.png
Kaya's a cousin! 10/1/05, 5lb13oz

[KrisM]

I'm so sorry you're dealing with this. I"ll be adding to everyone's thoughts on Wednesday.

[TaChapm]

Hang in there Susan! You are in my thoughts and prayers. We are all here for you!

Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05
OMG!!! Baby #3 Due September 5, 2006!

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http://b1.lilypie.com/kLMem8.png

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[starrynight]

Susan, I'm sending prayers. I'm sorry to hear the doc wasn't supportive and that it's getting worse. I'm thinking of you!

[Melanie]

I'm so sorry about your MD's bedside-manner, or lack thereof. You have every right to cry, you are a mother and you are pregnant. Worry is what we do best.

I hope all proves itself to be well very soon.

[Corie]

Susan,

You and your baby are in my thoughts.
Stay strong.