[deleted account] ( 20 moms have responded )
I was wondering if any moms had experience with hydrocephalus and or brain bleeds. My daughter who is 6 months who was a 24 weeker has it and i dont really no what to expect with her having it as she gets older and she also had brain bleeds level 4 on the left and 2 on the right. being that 1 is the lowest and 4 being the highest as my doctors has explained it to me. Im so worried because the doctors have just told me all the bad things that could result from it so i was hoping that some one could maybe give me a little insight of what to except as she gets older. I am so worried i wont know what to do especially seeing i have healthy 14 month old and i know that im going have to different stuff with her just not sure what to expect when she comes home from the hospital so any advice or help would be appreciated.
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Rebecca - posted on 03/06/2012
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My son was born at 26 weeks and he had a bilteral grade 3 IVH. He ended up needing a shunt at 5 months old and we were told he would have sever mental delays due to it. We were told it was 99% sure that he would have some form of cerebral palsy and mental delays. He is 5 now and was just put into the gifted program at his school. He has a mild fine motor delay and is slow to learn printing and things like zipping his coat but other than that he is perfect! I wanted to tell you this because when I was going through what you are now going through I searched for some good stories and had a hard time finding them. I want you to know that their is hope and with faith and prayer I got through it and my son thrived! Just remeber that you being their with your little one is the most important key to her recovery
Dgrieco88 - posted on 04/27/2011
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Hey! My son just had his shunt put in 2 weeks ago, he's four months old. He had a brain bleed that supposedly caused hydrocephalus. He was born at 36 weeks which is considered a late preemie and had no signs of hydrocephalus in utero. This came as a complete shock to my family and even the nurses. They could not tell me the grade of the bleed because it was so tiny. His fluid did go down and the neurosurgeon felt confident he would not need a shunt. The next month his fluid had increased suddenly and they decided to then put a shunt in. As for his development he has no delays at all. He can stand on your lap with help, no problems eating or sleeping, holds his head up, rolls on his side, plays with toys, laughs, smiles even babbles to you. It is still early to really tell if there would be any delays at all but the neurosurgeon did say that most likely he will have non since they caught his hydro in time and the brain tissue was not damaged. The only thing I am worried about is the potential shunt revisions.
Andrea - posted on 01/08/2010
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my son also has hydrocephalus caused from a grade 4 brain bleed when he was born. he has had three surgeries so far and gonna have another one on the 13th of this month. the only thing i can tell you is pray alot and hang in there. i really dont now what to expect yet either. i dont have anymore kids he is my first and he was born at 24 weeks weighing one lb and ten ozs.
Therese - posted on 01/15/2010
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My 10 year old daughter was born at 26 weeks and had a grade 4 IVH with the left side having a worse bleed than the right. She had a series of spinal taps to drain the fluid to hopefully prevent the need for a shunt and it worked. The spinal taps were done in the NICU by the MD as soon as they found the bleed and hydrocephalus, which was just about a week after birth if I remember correctly. The Dr. and nurses later said they think she may have done so well and not needed a shunt due to the fact that i held her ALOT in an upright position during kangarooing. This may have helped the fluid to drain by gravity. She has mild cerebral palsy with mostly gross motor delays/inabilities such as she doesn't have as good of balance as the "normal" 10 year old and can't run as fast, but does pretty well. Her right leg is weaker than her left and she is left handed. She has had a few surgeries on her legs to correct internal rotation of her femurs (upper legs) and has had alot of physical therapy along the way as well. She didn't walk on her own until 25 months and crawling and sitting up were delayed as well. She saw a neurologist for about the first 3 years of her life, but now no longer needs to. The great thing about babies that they told us right away is that their brains can make new connections and any damage that was caused from the bleed may not be an issue. They can't really tell you what your baby is going to be like until your baby shows you/them what they are going to be like and that's in some ways a good thing since they will continue to grow and their brain will make new connections. That is why it is so important to make sure you get physical therapy, occupational therapy and all possible resources while your baby is young. We had a local birth to school age program which gave us PT, OT, teacher and nurse resources. They came to our home on a weekly basis. They provided lots of info and resources to make sure she was doing the best she could. Then she went to Early Childhood programing at age 3 and 4, prekindergarten age 5 and Kindergarten at 6. My daughter is in 4th grade and on the A honor roll. Most people wouldn't be able to tell she has CP since she can do almost everything other kids her age can do. She may never be a star athlete, but she is an excellent reader. She has never had a seizure. The ventricles in her brain will always be enlarged, but her hydrochephalus has been stable since we left the hospital 2 1/2 months after her birth 10 years ago. My advice is to be hopeful, take one day at a time, try to stay positive and get all of the possible help from the best resources you can find. My daughter sees an orthopaedic Dr and eye Dr on a regular basis. She is severely nearsighted, even with glasses, but does well with the vision she has. Your daughter will have developmental delays, but your resource people can help you help your daughter and give you advice and steer you in the right direction when needed.
Celeste - posted on 12/06/2009
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My baby was a 27 weeker, 2 pounds 9 ozs. She had a 3 grade bleed and hydrocephalus.It was hard in the beginning and some of the interns were very negative, they basically told me she would be retarded and I would have to do all her care. Well I 'm telling you no one know's how the kids will turn out. She had 2 brain surgeries and has a VP Shunt in. At first I thought this was the worst thing and that it would be so hard to take care of . She is now 5 and sometimes I dont even think about the shunt. As a baby I was very careful with her, you know you follow all the precautions, but I made sure she got to ALL her Neuro appts, therapies, everything. From the beginning she listend to Classical music and Baby Eienstien, I read like crazy to her and tried to treat her like a normal baby.Enjoy your time with her, daily. I look back at the first 2-3 years I should of enjoyed her more. I think I paid so much atttention to alll of her medical problems, time flys. I put her in a center were she got her therapies and was with other handicapp kids about 2 years after being there she entered regular day care with only a few kids with needs like her. Once she blended with those kids you would'nt even know that had alot of medical problems.Like I said, the interns were negative but her Neurosurgeon never really gave me a "How Is Gonna Turn Out Answer"so I had to keep believing she'd be fine and praying faithfully helped. Do what you can now, she did'nt fight to live for nothing, I told myself however she turned out I was gonna love her . She is currently in the kindergarten, reading, writing, and busy. She is a excellent school and excelling. She has other problems, Chronic Lung Disease, Asthma, but I tell you the shunt in her head seems to be our least worry right now.If she has one you'll go for yearly checkups and they may have to go back in to revise it. The put 6ft of coil in her so as she grows they won't have to keep going backi in, I hope this helps. By the way I also have my first child who was one pound thirteen and a half he was I think 24/25 weeks, he is now 12 no shunt, just asthma.