Although the main purpose of this book/website is to offer
encouragement to families, there are difficulties you may face on your
journey with your child.
For many of us, our prime source of difficulty is the medical
profession. I’ve always felt that one of my chief roles as a mother has
been to advocate and to speak for my child and to ensure that he/she was
treated appropriately. There are some things to keep in mind when
encountering the negative opinions. These rights also apply to finding
appropriate therapists for your child.
1.Your child has the right to appropriate, caring medical
2. Your child has the right to be treated first as a child, not
as a diagnosis.
3. You have the right to be involved in all aspects of your
4. You have the right to change physicians should the attitudes
and opinions of a particular Dr. not coincide with your goals for
5. You have the right to keep looking for a suitable physician
for your child
6. You have the right to ask questions about proposed treatment,
procedures or medications.
7. You have the right and ultimate decision when being approached
about end of life treatment options.
8. You have the right to say no to a DNR (do not resuscitate
order), or medications that may hasten the death of your child.
9. You have the right to be a pain in the …….as you seek
appropriate treatment or care for your child
When dealing with the medical profession there are a few things to
1. Most Drs see very few children with Hydranencephaly. Most
likely your child will the first for your Dr.
2. Due to their lack of exposure the only knowledge many Drs.
Have of Hydranencephaly is what they read in a textbook. They have
no knowledge of how a child can develop and thrive in a loving
3. Most Drs. only see your child and others with Hydranencephaly
for short periods of time when they are ill or needing treatment for
something or other. Therefore they may not have accurate pictures of
4. Drs. tend to see our children as having lots “wrong” as they
compare them to typical children. We assess our child’s condition by
comparing them to themselves. For example: You take your child to
the emergency room for a respiratory infection. You tell the staff
what is different from usual for your child. The staff just seem to
see all the things that are “wrong” rather than just focusing on
treating your child’s condition.
5. Drs. often allow their own value system or feelings to “take
over”. i.e.; If the Dr. has the opinion personally that children
with conditions such as Hydranencephaly have a very low quality of
life that will be reflected in their treatment suggestions.
6. You may hear Drs or other professionals say things like
“parents see what they want to see” or ‘you need to face reality”
when talking about things your child can do. Don’t (or try not to)
allow them to get you down. Remember, parents know their children
the best. If you see that your child can do something, then continue
to encourage him/her and ignore the Drs. (I found it very sweet when
a Dr or professional who had previously told me my daughter couldn’t
possibly be doing something –using her hands to explore for
example-realized that she actually could do it.)
Once again, you need to be your child’s voice and prime cheerleader
and interpreter when encountering negative opinions.
Do Not Resuscitate Orders (DNRs):
This is a depressing and frustrating topic but unfortunately most
families who have a child with Hydranencephaly or a similar condition
will be faced with it and some point or other. There is a lot of
confusion as to the meaning of a DNR. Taken literally it means
specifically that: in the case of cardiac or respiratory arrest, no
chest compressions will be given. It can also mean no medications or
treatment to restart the heart, or intubation. Legally that is all it
means. I have checked out the literature currently available online, and
nowhere have I seen that it means do not treat. However, in the
experience of most families that is how it is interpreted by the medical
people caring for our children. I was faced with that problem when it
became apparent that my daughter was dying. The hospice that she went
to, took it that without a DNR any treatable condition legally had to be
treated. Because no one in charge had signed her DNR form, it was felt
that her severe dehydration must be treated with IV fluids, or surgery
performed should it be needed to help her be able to eat again. In her
case all of that was ludicrous as it was very clear that she was dying.
(See Angel Kayda’s story for more details).
However, most of the time, with our kids, this is not the case and our
children need to be given the same treatment as any other child.
To the best of my knowledge (I am only a parent, I have no legal
training or expertise), it a Dr or hospital refuses to treat all
treatable conditions in your child, you should be able to make them do
so. I know, a fight is the last thing you need at a time like that but
the law is on your side.
For more information on DNR orders and laws relating to that see the
An advance directive is another word for DNR order. Some families
have ones' written specifically for their child that they keep on hand
just in case it's needed