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Welcome

You've just been told that your child has Hydranencephaly. Or you've just discovered our site and realized that you're not the only one who has a child with this condition. I'm glad you've found us. Life with a child with Hydranencephaly has many challenges but also many joys. Know that you're not alone. There are others on this journey as well. 

I'd like to share with you some of the things that can be very important to know during your first few very confusing days after hearing that a child has Hydranencephaly. Remember, a Doctor making this diagnosis may never have seen another child with this condition. What he knows about it, is based on current medical teaching and what is in text books. This can paint a very dismal picture of the future of a child with Hydranencephaly. And that can affect the doctors' advice to the family and even treatment of the child. 

Here are some things to think about and remember during these first days:
1. Join the Hydranencephaly Mailing list   on Yahoo, or Rays of Sunshine Hydranencephaly Information and Support on Facebook. These 2 groups are where you'll be able to talk to and ask questions to people who are also walking this road. 

2. No one can say how long a child with Hydranencephaly will live. The first year is the most difficult. If a child makes it beyond that first year they often go on to live many years. We know of 2 people who are over the age of 30 who have Hydranencephaly.

3. Insist that your child's doctor treat your child as he would any other child. 

4. One of the first dilemmas often faced by a family is whether their child needs to have a shunt inserted to drain excess fluid from their heads. For more information on this conditions which is called Hydrocephalus go to: Hydrocephalus  Over the years we've found that some doctors are reluctant to put a shunt into a child with Hydranencephaly. They say it won't really make a difference. Well it does. A build up of fluid in the head is very painful. One of the biggest roles our group has played is to help families advocate for a shunt for their child.  If you're facing this difficulty contact Barb or write to the mailing list: hydranencephaly@yahoogroups.com (see above link to join if you're not a member already). 

5. Children with Hydranencephaly are often irritable in their first year. If your child is irritable the first thing to check is to see if there's a build up of fluid in their head. If not, another common reason is reflux. This is where stomach contents comes up into the esophagus. It's very painful. There are treatments and medications that can help. For more information check out: Feeding a Child With Hydranencephaly

6. It's true that a child with Hydranencephaly will likely live a shorter life. But, it's still important to celebrate the life your child has. Doctors often put more emphasis on helping a family prepare for their child to die rather than on enjoying their life. Celebrate everything your child does. Even something as small as a new tooth is reason to celebrate. Take pictures, take pictures, take pictures!!!!! You will never say, in later years "I wish I hadn't taken so many pictures of my child". Take videos too. 

7. Be "proactive" for your child. If your child's doctors or nurses don't give suggestions on who to go to for help with therapy or equipment for your child check out: http://www.yellowpagesforkids.com/help/states.htm or http://www.nichcy.org/states.htm for resources in your state. 

8. Treat your child as you would any other child. Give them lots of stimulation and love. Our families tend to buy up any special toys that makes noise or lights up that they find.  Check out the stimulation section of the website for more ideas.

9. Trust your instincts for your child. You are the expert on your child. If you're getting recommendations or suggestions that don't sound right to you, believe in yourself, and either contact the mailing list for advice or seek a 2nd opinion or new doctor. 

Above all, Know you're not alone. There are a lot of families facing the same issues you are who are always available for advice, comfort and to rejoice with you.

Let me introduce you to some of our children and what they can do and have done: 
Words of Encouragement

One thing that many of us start out believing is that Doctors are right and know what is best for our children. What we learn as parents of a child with Hydranencephaly is that this may not be the case. 

Words of "Wisdom" when dealing with the medical profession

And, What Doctors Say, and What They May Mean

Please check out our section with Information on Hydranencephaly.  Here you will find informative brochures and information we've developed over the years. 

I would also invite you to join the Hydranencephaly Mailing list on Yahoo

Subscribe to the Hydranencephaly Mailing list

August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

Please report any broken links or missing photos to angelbearmom@shaw.ca