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Book: Caring for Your Child With Hydranencephaly

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Words of "Wisdom" from Barb

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 treatment.

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 child’s treatment.

4. You have the right to change physicians should the attitudes and opinions of a particular Dr. not coincide with your goals for your child.

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 remember.

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 stimulating family.

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 your child.

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 Choices page

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

Sample Advance Directives

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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.

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