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:
Join the Hydranencephaly Mailing list on Yahoo, or
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
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
email@example.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
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.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:
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.
"Wisdom" when dealing with the medical profession
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