hydrocephalus and brain bleeds

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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

Dee - 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.

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.

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.

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19 Comments

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Diana - posted on 09/25/2013

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As many of the members of our support group have said, this is a challenge that is definitely worth the fight. As others have said, every case is like a snowflake--unique in its own way.

Our support group has members of all ages, who have been living with the condition, many for over 50 years. We've also got parents who have over 50 yrs of experience in raising their children with the condition. It has always been a challege, but one that was worth every effort.

The Hydrocephalus Support Group, Inc. is a 501(c)(3) organization that has been offering moral support & information to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus. We meet on the third Saturday of each month in the Casey Conference Room at Swedish Hospital's Cherry Hill Campus (17th & Jefferson/Seattle) from 12:45 pm - 3:00 pm. We welcome drop ins and children. We also have a blog (http://hydrocephalussupportgroup.blogspo...).

Missy - posted on 10/21/2012

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If you need any help or want to see a 7 year old on his journey with Fronto-Nasal Dysplasia, which also caused Obstructive Hydrocephalus. please visit us at https://www.facebook.com/JamesNolan21 James just went thru his 4th head surgery and is now home. This is the place where James will express all of his accomplishments, therapies, surgeries, school events, or anything else that applies to his progress and quality-of-life improvements. All are welcome to share in their journey as well.

Caroline - posted on 07/04/2012

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My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway. Now she is taller than me.
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Christie - posted on 02/24/2012

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My son was born at 24 weeks 1 lb 5 oz and at day 3 he had a stage 4 brain bleed across the whole brain part of the brain on right side has died and and 2 spots on left! He has had a resivoir that they had to drain 2x Dailey up to 67cc the doctors never saw so much! He had his first shunt at 5 months and revised after 3 weeks and infected after 2 weeks and revised again! He is blind, deaf, has cerebral Palsey in left side, uses an G-tube implanted in his tummy to eat, is oxygen dependent, has seziures, sever apnea, and Brady cardias there's also more problems from being so premature! He is know 16 months 12lbs and when healthy enough we have him at home! He's our 5 child so very hard on family for him and I to be gone so much! The hospital is 4 hours from home! He's the light of our life! Our little miracle

Ashley - posted on 10/16/2011

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I'M having twin girls and one of them has a grade 3 bleed in utero..has anyone else had this?

Lindsey - posted on 01/26/2010

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My son was born at 24 weeks weighing 1lb 12 oz. The day after birth he was diagnosed as having a grade 4 bleed on the left and grade 3 on the right. He had several taps via ventricles and spine. He had a temporary reservoir placed in order to allow for ventricular taps to control the hydrocephalus. Since the reservoir was placed he hasn't had any taps! so the doctors are still considering whether a shunt is necessary. We were asked to stop all treatment as the doctors felt his quality of life would be poor. We were told he would never eat, walk, talk and basically would be bed ridden with a feeding tube his entire life which was heartbreaking. However, even though its still early and he is still hospitalized, he is learning to eat from a bottle and learning to support his own head and there's still a week to go before his term due date. We're hopeful that he will lead as normal of a life as possible, he is such a fighter. We are already involved with PT and OT and have now been told by several specialists that early intervention is key in his development. Good luck to you and you're daughter. Stay strong.

Bobbi - posted on 01/17/2010

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Hi Jessica. My daughter was born 8 weeks early, weighed 2 lbs. 7 oz. and 3 out of 4 of her ventricles didn't work. I don't remember the level of her bleed but like you they told me all the bad stuff. She had several spinal taps till they put in a ventricular drain, kind of an external shunt. That didn't work and at 5 weeks they put in her first shunt. I am happy to say that she will be 14 on Friday the 22nd. She had 2 shunt revisions early on and then we went 9 years before she had another malfunction. The tubing broke and she had to go in for emergency surgery this past March and had it replaced with a new one. Like you, I was always concerned that she would have a lot of problems. She is a very normal child and you would never guess she has hydrocephalus. She does have learning disabilities and some fine motor skills problems but she is able to overcome most of that now and has adjusted. It took her till 5th grade to learn to ride a bike. But, she is the JOY of my life! I can't say enough good about her. I know each child is different so my story may not be the same as yours, but I'm here to offer you hope that your daughter can be a success story. I'm involved with the hydrocephalus support group and we have picnics to get the kids together and network. Who is her doctor? We have Pattisapu.

Rebecca - posted on 01/14/2010

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My son was a 26 weeker and he had a grade 3 bleed on both sides and hydrocephalus and he had to have shunt surgery when he was 4 months old. He is three now and totally normal. He has had one shunt revision and other than that he is good

Lindsy - posted on 12/17/2009

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It is so hard to judge the outcome of a brain bleed, my daughter had a grade 2 on left, but is now 7 and has lower limb Cerebral palsy. But stay strong ladies, there is light at the end of the tunnel. And plenty of help too.

Gina - posted on 12/15/2009

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My daugher was diagnosed at 2 weeks with a grade 3. But a few months had past and it went away. Hopefully yours will do the same. Idk if that will affect mine in the future or not. But hopefully everything will be fine and I wish you the best of luck.

Angela - posted on 12/09/2009

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My son was born at 27 weeks. He weighed 1 lb 6 oz and has a bilateral grade 4 brain bleed meaning it's across his brain. He just had an MRI done and among other things it showed that there is a piece of his brain on the left side of his brain that is dead. He is also at risk for seizures because his head circumference is not really getting any higher and there is not as much fluid around the brain as there should be. He has physio once a week and we have noticed that he is not really using the right side of his body and if he does it almost like hes uncoordinated and doesn't know what to do. Everybody has a part of their brain that they they do not use and they are hoping that with persistent work and massaging of his right arm and leg that that part of the brain will take over for the part that is dead. He does not have a shunt yet but there is a possibility that he will need one. Hope that helps!! Good luck too you!!

Jennifer - posted on 12/07/2009

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my son was born at 28 weeks , who also suffer from IVH grade 2 on the right side.

Terri - posted on 12/07/2009

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My daughter who is now 11 yrs old, had IVH. intraventicular hemmorages. She had a grade 3 on one side and 2 on the other. She did not need to have a shunt. She is a normal happy girl. She does have some learning disabilities, but she just has to work a little harder than others. Her bleeds resolved on their own.

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