July 17, 2008,
L.H. asks from Manteca, CA on July 03, 2008
Fetus Having Too Much Fluid Around the Brain
Just wanted to get some input on a touchy situation that I have never had to deal with. My brother and fiance are about 15 weeks pregnant and went today for a sonogram and were hit hard by some bad news. They were told that the fetus appeared to have too much fluid in it's head around the brain, not in the brain, around the brain. This they were told that the fluid would not allow the brain to grow properly and that they need to go see a specialist. Very scary to many people who this has happen to but hits a little to close to home since this is my brother's first child, and they did find out that it is a baby boy! I dont know too much about this condition and just wanted to hear if anyone has heard of this and what was done about it and the long term affects. Thank you for your time to read this and hopefully someone will shed some light on this situation.
2 moms found this helpful
So What Happened?™
I so thankful for the many who responded with information and also to keep my brother and his new-to-be-family in their thoughts and prayer! They did go today for their specialist appointment and I am so happy to say that there is NOTHING wrong with the little miracle growing inside!! :) He is a healthy, bouncing, big, baby boy and they are just so glad they are able to FINALLY enjoy this precious time and think of baby names now! Thank you again to all of you who responded to my request!!!
C.J. answers from San Francisco on July 04, 2008
I must correct one point of Melanie's response - Down syndrome is a chromosomal abnormality, present from conception or just after conception, where there is an extra #21 chromosome. Having fluid on the brain would not cause an extra chromosome to be present in the cells, but perhaps what she meant is that it could result in developmental/cognitive delays similar to what one finds in people with DS.
I believe the usual treatment for hydrocephalus is to place a shunt to drain off excess fluid into the body where it can be eliminated easily.
I recommend they take someone with when they see the specialist, someone who can be another set of ears, because when faced with challenges like this, people often don't retain all the info and need to hear it multiple times, or can't think clearly enough to ask questions.
Also, I suggest they find other parents whose children have been born with similar issues and talk to them to get an idea what the reality could be. There may be parents who have agreed to be mentors or talk to new parents. If in SF, I recommend calling Support for Families of children with Disabilities for information and connections.
I am sure it is a very hard time for your whole family, and my heart goes out to them. I know from my own experience that you have to grieve the loss of the baby you thought you were going to have, but it doesn't mean the one you have will be less loving, lovable and loved.
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K.W. answers from San Francisco on July 04, 2008
When I had my sonogram, my doctor thought he had seen too much fluid around the baby's brain. Needless to say I agonized about this for days. My ob. referred me to have a more detailed sonogram that was conducted by x-ray specialists. Luckily, everything turned out to be ok and now I am enjoying my newborn who is normal and is now 6 weeks old. Get second opinion before making any radical decision. (Having too much fluid around the brain could lead to possible retardation.)
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M.M. answers from San Francisco on July 04, 2008
There might be a couple of possible complications with fluid around the brain:
1) spina bifida - a condition in which cerebrospinal fluid collects in and around the brain and will not drain. A form of down syndrome can result if the fluid is not drained regularly. This can be accomplished by implanting a special tube leading from the brain down into a vein in the child's neck or into the child's chest to allow the fluid to drain.
2) Hydrocephalus - too much cerebral-spinal fluid. Again it is about draining - a shunt placed in the baby's head. If there is too much fluid it can put pressure on the brain and effect motor skills, cognitive function, sight, etc.
I understand that these can be diagnosed before birth by amniocentesis or ultrasound.
I have read that the risk of having a baby with spina bifida or other associated defects seems to be reduced if a woman takes at least 400 mg of folic acid just before and throughout pregnancy.
My prayers are with them.
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L.H. answers from San Francisco on July 05, 2008
To make a very long story short...The first time I was pregnant, we found out that my baby girl had too much fluid on or in the brain. I then had an amnio and found that she didn't swallow right and was going to be severly retarded (with further tests). My husband & I decided to terminate the pregnancy. By the time all of the tests were done, I was 29 weeks along. Needless to say, it was a horrible experience, but we both felt it was the right thing to do. We now have 3 beautiful, healthy children. Your soon to be sister in law, needs to see a specialist, just like she was told. Having hydracephalus doesn't mean all of that can happen. I just wanted to share my experience. Like other people have written, they can have a shunt put in, depending on the severity. An amnio will tell much more. Good luck and God Bless.
M.S. answers from Sacramento on July 08, 2008
You know, it can range in severity, and it is the doctor's responsibility to give them worst case scenario. Unfortunately, they are not going to know until the baby is born. There are things like a shunt that can be inserted in the head (if necessary), to drain the fluid.
Easier said than done, however, they should do the best they can to joyfully anticipate the arrival of their first child - this time will not come again. They will track the development at doctor appts. and that is all they can do.
The baby may be fine and unaffected. As with all pregnancies, there are risks. They can contact Warmline Family resource center for more info.
J.C. answers from Sacramento on July 17, 2008
I had a similar situation when I was pregnant. On the day we found out we would have a girl - very exciting - we also found out she had spina bifida and possibly hydrocephalus (the water on the brain). We were pressured to have an abortion by one particular Dr, but decided that wasn't for us. We figured God thought we would be perfect parents for her, and she is just wonderful. The day after her birth was a scheduled surgury to close her spine. We couldn't hold her for over 2 weeks. Agonizing I tell you! When she was 2 weeks, she had a shunt placed for the fluid in her brain. When she was 2 1/2 months, that shunt malfunctioned and they had to do another surgury to replace it. She is now almost 2 and just beautiful. They said she would probably never walk, may not be able to feed herself... all these things a new parent never wants to hear. But she gets lots of therapy (all free!) and she just learned to crawl a couple months ago, just stood up by herself last week with no help and her motor skills are age appropriate now. I do suggest they get all the help they can. There is so much out there, and it's all free from county/city programs. I am in the Elk Grove area, we have Alta Regional, Warmline, and Sacramento County Office of Education. They have all been wonderful to us and our precious little baby Bella.
Good luck to your family and enjoy the gifts you are given!!
D.A. answers from Sacramento on July 06, 2008
Just to let you know, this can be serious. However, I also want you to know that my sister was told the same thing about my nephew who is now 19 and totally normal, his head is slightly larger than normal when he was born but he grew into it. Good luck and God bless.
B.L. answers from San Francisco on July 04, 2008
A specialist needs to evaluate this woman. If there is truly fluid around the brain then she needs to consider what she wants to do - abort or carry this child to term and deal with all of the issues that go with a child who has special needs.
This is not an easy situation but the first thing is an evaluation by a SPECIALIST.
God Bless -