WHEN I WAS 19 WKS PREGNANT, I FOUND OUT I WAS HAVING TWINS. THE VERY NEXT DAY MY WATER BROKE IN THE BOTTOM TWIN (THEY WERE IN SEPERATE SACS) I WAS TOLD THERE WAS NOTHING THAT COULD BE DONE. I WAS PUT ON BED REST.
THE DOCS DIDN'T EXPECT ME TO MAKE IT A WEEK,
WELL TO EVERYONE SUPRISE, AT 24 WEEKS I WAS PUT INTO THE HOSPITAL, STILL PREGNANT. I GOT DAILY ULTRASOUNDS, ALL SHOWING THE SAME THING, NO WATER HAD FORMED AROUND THE BABY. THEY SAID THAT I WAS BASICALLY JUST GOING TO HAVE ONE BABY MAKE IT. AT 27 WEEKS I STARTED BLEEDING,SHOWING SIGNS OF PLACENTA ABRUBTION, BUT NEITHER BABY WAS IN DISTRESS, SO WE HELD OFF. ONE WEEK LATER, I WENT INTO LABOR, THEY DID AN EMERGENCY C SECTION, BECAUSE NOW THERE WAS DISTRESS. THAT WAS A ROUGH NIGHT, BOTH BABIES WERE IN THE NICU, BUT STILL ONLY THE ONE EXPECTED TO LIVE. WELL, MUCH TO EVERYONES COMPLETE SUPRISE, THEY ARE BOTH STILL HERE. THAT WAS IN OCTOBER. NOW HERE IS THE REASON I AM WRITING:THE BOY (THE ONE WITH NO WATER) DEVELOPED PULMONARY HYPERTENSION, THUS CAUSING A GRADE 4 AND A GRADE 3 INTRAVENTRICLULAR HEMMORAGES. THIS THEN CAUSED HIM TO HAVE HYDROCEPHALUS. TO DATE, HE HAS HAD 5 SHUNT OPERATIONS, AND WILL HAVE ANOTHER NEXT WEEK. THERE HAS BEEN NUMEROUS COMPLICATIONS DUE TO THE SEVERITY OF THE BLEEDS IN HIS BRAIN. THE DOCTORS CAN'T GIVE US A LONG TERM PROGNOSIS,THEY CAN'T EVEN GIVE US A SHORT TERM ONE. WE WOULD JUST LIKE TO KNOW OF ANYONE WITH A SIMILAR SITUATION, AND THE OUTCOME, GOOD OR BAD. IT'S NOT THAT WE CARE IF HE IS DISABLED, IT'S JUST THE PAIN OF BEING SO CLUELESS.
IF ANY ONE CAN BE OF ANY HELP OR SUPPORT, PLEASE. IN CASE ANY OF YOU WERE WONDERING, HIS SISTER IS DOING GREAT, OVER 10 LBS. NOW, JUST THE PICTURE OF PERFECT HEALTH.

ANP, I only looked at this category because of something about my grandson. But after reading your note I just wanted to wish my prayers to you and your family. I can only imagine the questions that are running through your heads, let alone the thoughts. I hope you can find some answers soon. This little boy sounds like a little miracle so maybe he has that in his favor.

Has no one ever heard of this? I just thought maybe somewhere in this world that this has happened to someone else. Are we alone?

I have worked on a pediatric floor that recieves neurosurgery kids. I am always being amazed at how well some children have done that should not have lived. The problem is that we cannot predict which children these will be. We have several familys whose children have severe and complex hydrocephalus. You are not alone. Unfortunately I cannot put you in contact with these families due to confidentiality. It sounds like your son is one of those children who are an extra special gift given from above.
I wish I had more to tell you, but right now we don't know enough about the brain and it's function to give you an accurate prediction. It is frustrating to hear that we don't have the answers. Only time will tell what abilities (not disablities) your son may have.
My prayers go out to you and your family as you face surgery again. Keep asking you doctor and the nurses your questions that is what they are their for.

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janetrn

Hi APN,
I am so sorry to hear about what you and your little guy are going through. I have twin girls who have TS, and I go to the neurological forums at http://neuro-mancer.mgh.harvard.edu/cgi-bin/Ultimate.cgi
There is a separate forum for hydrocephalus. For me the more info I have the better I feel. Give it a look there and my hugs to you and yours.
~leigh

[This message has been edited by ~leigh~ (edited 05-05-2001).]

Hi,

I really feel for you i do my son was born with a hydrocedhalus, due to quick birth. he had several shunt operations due to infection etc. I just wanted to inform you he is now a healthy 6 yr old although he does have certain development problems and epilepsy but with weekly physio and help he is really begin to thrive. I know now is the worst time the doctors say that they don't know if or how serverly damaged he will be, but you musn't give up hope, my son has his problems but he lives life to the full so the results maynot be neccesarily bad!

Im not sure if you recieved my message or not my son also has had many shunt operations for his hydrocephalus if you feel you want to talk you can email me on ammie3@hotmail.com i will only be to glad to help.

Ammie,
Thank you so much for responding. My little angle just got his 12th shunt revision surgery last week. He seems to be doing much better. He had an infection which was causing blockage. He is on IV antibiotics for a couple more days. He is 7 months old now and can barely hold his head up. He is just now starting to smile sometimes. he gets Occupational therapy 2x week. Not sure if it is helping yet. His nurses say he is not showing any obvious signs of cerebal palsy, But it is VERY possible that he has it and we won't know until he starts to develop more. Any way, thanks again for responding. Sorry it took me so long to get it. I,ve been very busy with all that is going on. ajpreiss@hotmail.com.
http://www.healthboards.com/ubb/wink.gif Amy