Does large parts of brain matter missing really meen severe learning delays?

[deleted account] ( 7 moms have responded )

My daughter was born on 10/25/10 and when she was 3 months she went into the hospital with an ear infection and they saw that her head cercumference was large. That's when I found out she had Hydrocephalus. She has large parts of brain matter missing and the doctors tell me she will never walk, talk, or do many other things. I wanted to know if anyone else has a child with similar issues that is grown and if they have tips for me and what they have achieved throughout their life.

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Diana - posted on 09/26/2013

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Every case is unique. My mother was told, in 1961, that I would never be able to walk, talk, feed or dress myself. She was told that it would 'be best' to turn me over to the state & "forget you had her". Thankfully, she didn't listen to them. I've probably outlived the 'experts' who said I should be dead by now. My brain scans show that my ventricles are HUGE, which is normal for me. According to my neurologist & neurosurgeon, if they shrink I will be in extreme agony & be looking at death.

Despite what some might say about me based on those scans, I am very independent and high functioning. I went to public school (K-12), got my GED, went to college (majored in culinary arts) & have accomplished a lot. Over 90% is stuff that those 'experts' never would have predicted for me.

Every situation is unique, in large part because delays and damage depend on what part(s) of the brain are impacted. It is one of my pet peeves about the general lack of knowledge when it comes to hydrocephalus. The kids DO grow up. While some of us aren't able to live totally independent lives, we are capable of living the best lives we can. We can overcome a lot of the challenges, some associated with hydro and others placed on us based on the diagnosis, but overcoming those challenges gives us a powerful resource to draw on in moving forward with life. I'm not saying everyone, but a lot of us have careers and lives that many 'professionals' didn't believe was possible. So I wouldn't let the negative predictions limit what could actually be in your daughter's future. I've gotten to know some really great people who have hydro and who have successful marriages, kids and careers. I would suggest giving your daughter as many options in life as possible & encouraging her to do her best and follow her strengths, while seeing weaknesses as challenges, some of which may be overcome and others that, like everyone, just are part of her.

Jane - posted on 07/03/2011

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A coworker had premature twins who also had hydrocephalus. The girls are now 18 years old. One girl graduated from high school this year. She has mild cerebral palsy because of the hydrocephalus and so is in a wheelchair. She has an assistance dog, who passes her things she needs, helps carry her books, and opens doors for her. Although she had a very, very hard time with math due to the damage from the hydrocephalus, she is off to junior college in September. She may or may not be able to live independently. She cannot drive.



Her sister didn't do quite as well. She cannot walk at all and has a number of learning disabilities. She is also ODD (Oppositional Defiant Disorder). She will never be able to live on her own, unlike her sister, so her parents are looking for a group home for her, preferably one coupled with some sort of sheltered workshop so she can be productive.



The girls were diagnosed several days after birth, and both have had shunts put in place (and replaced a few times).



I know that their parents had the girls go through extensive therapy: physical, occupational, educational, and psychological. The mom decided to home-school the girls when they were younger because their therapy schedules conflicted with school hours, and because the girls needed more attention than they would get in a public school. One girl attended high school. The other remained home-schooled.



Sometimes an amazing amount of missing brain in infants regenerates. Sometimes it doesn't, especially if the cause of brain tissue loss goes undetected for long. Also, what a child will and won't be able to do is controlled by what parts of the brain are missing or damaged. Brain damage can cause physical problems, learning disabilities, and emotional problems.



The doctors undoubtedly do not want to give you false hope, but it does sound as if your child's hydrocephalus was diagnosed fairly late. Thus, I would suggest doing all therapies your insurance will cover, learn as much as you can about the condition, and do additional therapy with her at home. I also suggest watching for any improvement no matter how small and celebrate it. Do what you can to give her pleasure and stay healthy, and love her. Accept what she is able to do, but do not expect a miracle. She will probably need expensive care for her whole life.



You also should see if you can find a support group of parents dealing with the same sort of problem.



As the National Institute of Health (http://www.ninds.nih.gov/disorders/hydro...) says:



"The prognosis for individuals diagnosed with hydrocephalus is difficult to predict, although there is some correlation between the specific cause of the hydrocephalus and the outcome. Prognosis is further complicated by the presence of associated disorders, the timeliness of diagnosis, and the success of treatment. The degree to which relief of CSF pressure following shunt surgery can minimize or reverse damage to the brain is not well understood.



Affected individuals and their families should be aware that hydrocephalus poses risks to both cognitive and physical development. However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations. Treatment by an interdisciplinary team of medical professionals, rehabilitation specialists, and educational experts is critical to a positive outcome. Left untreated, progressive hydrocephalus may be fatal.



The symptoms of normal pressure hydrocephalus usually get worse over time if the condition is not treated, although some people may experience temporary improvements. While the success of treatment with shunts varies from person to person, some people recover almost completely after treatment and have a good quality of life. Early diagnosis and treatment improves the chance of a good recovery."



I am so sorry this happened to your daughter. You and she will be in my prayers.

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Corey Rhodes - posted on 07/01/2015

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Hi my daughter is 7 years old and was diagnosed when I was 7 months pregnant with her. She was born with 10% of her brain and a brain stem. She is severely developmentally delayed.
i was told she wouldn't survive birth but in the less than 1% chance she did she'd be a vegetable. She survived and continues to prove the Drs wrong in so many ways.
Not all children achieve or accomplish the same way, so I can only give my daughters experience.
She did everything super late. Walked at 3 1/2 yrs old. She says a few words but most is babble to us.
Therapy is the biggest thing.
Will she do everything that other children do maybe not especially at the same time they do, but we never give up hope with her.
I know other hydro's that are right on target and ones that are worse than my daughter. It is not easy in many ways.
Just love your baby, give her the best world you can and therapy.
The Drs don't know everything about the future of our children. They can only guess and usually give worse case scenarios. You can find my daughters page on fb at hydrocephalus awareness

Angeles - posted on 06/02/2014

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Hi, my daughter is 1 month and she as well has very little brain mass and doctors tell me she wont walk, talk, recognize us, or anything and that she will be like a newborn her whole life. I just whant to know about other cases like my daughter how they are progresing?

Angeles - posted on 06/02/2014

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Hi, my daughter is 1 month and she as well has very little brain mass and doctors tell me she wont walk, talk, recognize us, or anything and that she will be like a newborn her whole life. I just whant to know about other cases like my daughter how they are progresing?

Michelle - posted on 07/26/2011

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My son was born with aqueductual stinosis causing hydrocephalus. We were told he would be severely "mentally retarted". That he may be blind and not beable to recognize people or things untill he smelt or touch or heard them. My son has had 12 brain surgeries, including exploritory brain surgeries, Vp shunts and external shunts. He has had two menigitis infections (from hospital surgeries), and one bacterial brain infection that just about took his life. He now has 2 shunts in his brain, one on each side of his head. My Travis is now 23 months. He says a few words, stands on his feet, he was assessed at a 12- 13 month level. He only has mild to moderate developmental delays. His last surgery was last dec. and after his surgery he regressed back to infantcy. So that being said, he is doing FANTASITC in the past 7 months! Its amazing what the brain does. When he was born they did a MRI on his brain and he had very little brain mass, most especially in the back region. He basically didnt have enough brain to support the shunt in the back of his head so they put it closer to his forehead. He had a MRI in dec(prior to last surgery) and his brain mass was unbelievable! Appeared "normal". My little guy is just like a "typical" one year old in a 2 yr old body. He sees physio, speach and occupational therapy. That has help him lots. We are absolutely surprised at his development. Keep positive, your daughter just might blow thoses Dr comments right out of the water and surprise everyone as Travis did. :)

Kristie - posted on 07/03/2011

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My daughter does not have hydrocephalus but she does have a chromosome disoder. She has various health issues included an congenital malformation in part of her brain. We was also told that she would most probably never walk, or talk, may have retardation, or worse. (possible complications leading to death) I know it is two different things but I can say never give up on them and never just accept that they cannot do it. My Megan is 21 months old and with intensive therapy she is now walking(with braces), talking up a storm, and shows no signs of altered mental statis. Megan can be anybody or anything she wants when she gets older. Your daughter can to. It may take more work for them but it will just make it that much more special when they achieve what they do. I know they are different but hopefully you take from me that don't stop fighting and accepting that it won't happen. I hope your daughter can also prove them wrong.

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