22 Sep 2011

Hydrocephalus and The Future

When we found out about our son having hydrocephalus we tried to focus on the information provided by our doctor.  We didn't alert the masses to tell them what had transpired a couple of days after his birth.  Firstly, we didn't want the stress of trying to explain what was going on, over and over to friends and family.  Secondly, we didn't want people researching the condition and scaring us with their findings.  Thirdly, we didn't want pity.  And finally, we (I) didn't want negative energy being aimed at our little boy, negative thoughts, negative concerns, the scary what ifs, and so on.  I wanted to try to remain as positive as possible, because I do believe that even 27 weeker little premature infants can feel and understand negativity.

Our direct family and a few friends were told about what had happened and our request to keep it private was upheld.  It was good to have the support of our direct family, as that was what mattered most at that time.

Eventually, we did get on the Internet and started a bit of research at recommended websites and so did our family.  The information really did freak out some family members.  Given the fact the NICU only allowed us, the parents, in to be with the babies, it was very hard for the grandparents and uncles and friends to understand what we and Baby B were going through.  How Baby B was looking, acting, family couldn't see this.  Pictures reflected a very small baby, with a very enlarged head.  These pictures were probably frightening to those who had not been able to see the baby with their own eyes and see he seemed to be fairing well.

In the long run, what we learned through information from the neurosurgeons, neonatologists and staff, was that each baby is different and hydrocephalus impacts each person differently as well.  Some babies may never be able to speak or walk.  Some babies will have long term, regular complications, whereas some babies have a corrective surgery and never have to go through it again. 

After a surgery is done to complete a shunt insertion, for example, there is the risk of infection or malfunction. 

For all of these things, only time will tell.

The neonatologist and neurosurgeons gave us stories of people with hydrocephalus growing up and living perfectly normal and happy lives.  Telling us many will attend university and so forth. 

They also told us that on a rare occasion hydrocephalics' bodies can actually heal themselves over time, blockages are cleared and the CSF begins to flow normally from the brain and up and down the spinal column.  This seemed to be one of those stories being told to us just to try to make us feel better about the situation, yet it did give us hope.

Then one day this month, I met a lady who told me her son had hydrocephalus.  "He does??" I exclaimed, "So does mine."  She looked at me like I was speaking another language, taking in what I just said.  I told her the basics of our experience and she was amazed, as I was basically describing her experience which had taken place 33 years ago.  Her son was born at 28 weeks or so and he was found to have hydrocephalus very quickly while in hospital as well.  He had a shunt inserted and had a few corrective surgeries by the time he was 3.  She then told me he was monitored by a pediatric neurosurgeon while he grew up.  At the age of 18 he was transferred to an adult neurosurgeon in Toronto.  When she and her son met this new doctor he completed his assessment and ran some scans and revealed to them that his shunt was not working.  Of course this worried them to hear this news, when all along they thought everything was fine.  He then said something like, "Did Doctor So-and-so not tell you your shunt is not working and it doesn't need to work anymore because your body is working for you again?"  I can only imagine the relief this mother would have felt!  That is an amazing and inspiring story.  I guess miracles do happen, dreams do come true and stranger things have happened.

I was able to meet this woman's son, who is the same age as me.  I met him yesterday and was able to talk with him about how he felt when growing up.  He told me he was not allowed to participate in contact sports, such as hockey.  Growing up in Canada and not playing hockey might be challenging for a kid.  He was not allowed to participate in any physical education activties and had to sit on the sidelines.  He was told as a child he couldn't do these things for fear of shunt malfunction and/or getting hit in the head with a ball, bat, hockey stick, puck, whatever...He went on to tell me that he was often delayed in many areas his peers were not.  They were hitting milestones at the right time and he wasn't.  He said eventually it got to the point he felt very excluded from his classmates, he wound up sitting in the back of class because it was harder for him to learn some things and he began to dwell on his condition and found that to be very hard.

He gave me advice and that was to avoid treating our son as someone "different."  To try not to over-protect and shelter him.  To get him out and active in his community and let him try things (within reason.)  He said he didn't blame his mother for over-protecting him, as she was young at the time, single and did her best to protect him and keep him well.  He also pointed out times have really changed in 30 years. 

When this man was born, his young, single, alone mother was told that it may be best to institutionalize him, as he would never walk, never talk and never be able to function like a "normal" child.  She did not take the doctors' advice and said she was determined to prove them wrong.  She did a very good job in proving them wrong, I think.  He walks, he talks and is healthy overall.  Then he goes and does the amazing and grows out of the need of his shunt.

He did tell me he finds it difficult sometimes dealing with math and that he does suffer from bi-polar disorder, which may or may not be attributable to some long term damage to his brain.  No one really knows.  He also had a mild shake in his hands. 

He says he is happy to share his story, as he did live a hard life in many ways, and if he can help others along the way, then it's worth it.

I am very grateful to have met this man and I now have a very well-rounded knowledge of what can happen and how to overcome any obstacles that may come our way.

9 comments:

  1. Wow. What a story. Im so glad things are okay. We have a good friends baby just diagnosed with hydrocephalus. Certainly scary! Txs for sharing

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  2. hi! i also have hydrocephalus since birth, and im now 25 yrs old. I've had 4 surgeries so far and I have been living a normal life.. =) i've attended college and now i am running a small business and spending most of time as a volunteer in community projects.. im hoping your baby will also grow well too..

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  3. Oh my goodness!! I can't even imagine the long roller coaster ride this will take you on. I admire your optimism and your determination to take things as they happen instead of preparing for the what ifs. You are already an amazing mother! What little loves you have!!

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  4. Wow! Thanks for sharing. It is so great to hear other peoples' stories and experiences. :)

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  5. Our little girl, and I do mean little (4 months old and only 6 lbs. 5 oz. She was 1 lb. 12 oz. at birth.) was diagnosed with grade 3 brain bleeds and hydrocephalus, this was after she had thankfully survived nec surgery and also had a PDA litigation (closing an open heart valve). They called us at home, which is always a bad sign. The NP explained their findings and that our girl would need surgery to put a VAD in. I asked if this meant there could be delays, and she said there was no way to know, but it is def. possible. The nuerosurgeon also called and said our daughter def. has brain damage, but the extent of it and if it will even affect her will only show in time. Also he said that she most likely would need a shunt. She was discharged 2 weeks ago after her 5th surgery (the third was the VAD, the 4th was to reconnect her intestines, the 5th was a g-tube so she could go home without learning the bottle). The nuerosurgeon confirmed before discharge our little girl will most likely not need a shunt!! We were thrilled. I have no idea what that means long-term, but for us it means one less surgery. That's a big deal for a little girl who has had it all, it seems. It is a journey full of uncertainties, but we already love our little girl and any issues that may arise will never change our love for her. God has blessed us and we are very thankful to even have her as a part of our family. I knew very little about it before we were told our little girl had it. It is good to hear other people are going through the same thing and to hear their results thus far and how they are handling it. Thank you so much for sharing!

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  6. Hi Kristin, Thanks for stopping by. We also had our own experience with 2 PDAs. Baby A's closed after a round of ibuprofen. Baby B's was stubborn and even after 3 rounds of meds (ibuprofen and then indomethecin) his PDA was still fairly large. Just shy of 14 mths (11 mths corrected) he had the closure done. So far so good. He was also very small at 4 mths, just 7 lbs. How many weeks gestation was your baby girl?
    Through all our ups and downs at the hospital we always knew some things could be worse, and saw several examples of terrible outcomes for other children, so we tried to stay positive, because that's better than worrying "what's next?"

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  7. Thank you for the follow and for it bringing me here today. Although I don't have children with needs or conditions, it is always enlightening to hear of others, their struggles and be educated about their conditions. I also love it when doctors are proven wrong in cases like this! Amazing! I will continue to check back and learn more and to see how your roller coaster ride is going along. I'll be here to pray for you when needed, too!

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  8. Thanks so much for somehow finding the time to share such important information. I gave your blog a Liebster Award on my site today! Check it out if you are interested. I feel your writing makes such a great contribution to bloggy world. :-)

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