|
|
|
Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Frequently
Asked Questions About Hydranencephaly
General Information On Hydranencephaly:
The oldest person that we know of
is 24 years old.
According to the study conducted in
2002, and also the list of children we know of with
Hydranencephaly, the average age of
children living is 7.7 years, and the average age of death has been 4.7 years.
These numbers really don’t mean a lot. As with all averages many are older or
younger than that age. I also believe that the average age of death is so low
because it includes the children who died before or just after birth, and those
who died because a Dr refused to treat the child, or those who were born too
early due to a Dr insisting on an early delivery.
Of course, that’s impossible to
say. Of the 53 children we know of who have died, 39% died before the age of 1.
Our oldest child who has died was 17. We have 4 children/young adults who are
now over the age of 20. Some of the
children die suddenly with no warning. Most have either been ill, or have
gradually had increasing health problems, or their bodies have just gotten
tired. The most important part of being a parent of a child with Hydranencephaly
is to cherish every single moment of your child’s life. Take a ton of pictures
and videos. You will never regret having too many pictures or videos and I can
guarantee you that no matter how many you have, after your child dies you will
wish there were more. Forget the dust in your house, sit and cuddle your child.
Throughout Kayda’s life, I never was able to plan ahead because I never knew
how long she’d last. I didn’t want to “jinx” things by planning too far
ahead. But, about 4 months before she died I realized that she was dying and
that I needed to let her do so. Because of that knowledge those last 4 months
were so precious. I took a ton of pictures that still bring comfort. And,
looking back at the pictures I’d taken over her life, I realized that she’d
had a very happy full life. That made her death somewhat easier. Most families
don’t have that warning period. Just enjoy every minute you have with your
child.
Again, that’s impossible to say.
Your Dr will likely tell you that it will be pneumonia that will take your
child’s life. For the 53 children we know of who have died, 28% died of
respiratory problems, 9.4% of shunt or neurological related problems, 1.9% of GI
shut down, 5 % of brainstem shut down, and 41.5% of unknown causes.
A few of the children have died from acute respiratory illnesses. But,
most children just keep developing more difficulties and gradually recover less
quickly or completely from an illness. Some, like my daughter Kayda, just have
their whole systems slow down and die. In Kayda she started having increased
seizures, started sleeping a lot, got much colder, heart rate slowed
dramatically, respirations decreased and food stopped moving through her system.
We believe that her brain stem just shut down and wore out. Of course the end of
life is different for each of the children.
Yes, many of
the parents I asked, know CPR and have an ambu bag or several on hand at all
times and have had to use both. I never did for Kayda although she came close to
needing it several times. Another
reason this is good to know is that some families have had trouble finding a Dr
who is willing to resuscitate a child with Hydranencephaly. So, sometimes you
are in a situation where no one else will do it. This doesn’t happen often,
but it was always my main fear with Kayda.
That’s not easy to say. Please see also question 4. In most
cases, the process of shutting down is fairly gradual and only recognized after
it’s been going on for a long time. That’s what happened with my daughter.
Generally a child who is “shutting down” will do so over a long period of
time (weeks or months). If your child is ill, but was generally alert and aware
and relatively healthy before that, he/she is likely not shutting down. In those
cases it’s always good to try treating your child with antibiotics, iv fluids,
breathing treatments, etc just to see if he/she can recover from the illness. If
the child doesn’t respond to those treatments, then it may be time to stand
back and not do aggressive further treatments. But, this rarely happens
suddenly. Children with Hydranencephaly frequently have coma type incidences
where for several hours or days, they are unresponsive, sleep all the time, and
have a very low temperature and heart rate. Generally the children recover from
this. Often these incidences occur before or after an illness. Kayda did this
quite regularly during her life. And, when taken to hospital I was told she was
shutting down. Well that never occurred and she always got better.
Yes, quite a few of the children have done this. Helping the
child with a ventilator gives him/her a bit of extra help and a chance to
recover and declare if they can recover from this illness.
Yes, again, there are a few children who have been on a
ventilator or bipap for several years and in 2 of the cases at least, the
children have never been as healthy or happy as they are now on the ventilator.
Having the ventilator help with breathing gives the child more energy to
interact with others. And, many of the children on ventilators aren’t on them
full time.
Yes, children’s diagnoses often change. The
most common other diagnoses are: Lissencephaly, Porencephaly, Lobar
Holoprosencephaly, and Schizencephaly. Some children end up with numerous
diagnoses throughout their lives. For most of the other diagnoses, the over all
prognosis and care doesn’t really change. Some like, Porencephaly are a milder
version of Hydranencephaly. Schizencephaly also is a less severe condition.
There are also children who are originally diagnosed with Hydranencephaly who
are later found to just have severe hydrocephalus. For
more information on the different conditions see: http://www.neurologychannel.com/cephalicdisorders/types.shtml
Yes, see previous question. We are also seeing children whose
brains were damaged shortly after birth who have the same sort of challenges as
a child with Hydranencephaly. Their brain scans appear to be the same of those
of children with Hydranencephaly. We include them in our group and statistics
even though their official diagnoses is not Hydranencephaly. For more
information on similar conditions see: http://www.neurologychannel.com/cephalicdisorders/types.shtml
Yes, definitely. Diagnoses of conditions such as Hydranencephaly isn’t an exact science. Often if you show a child’s CT or MRI scans to different Doctors, you will get a different diagnoses.
Unfortunately brain tissue does not grow back at all. But
that does not mean that the status and abilities of a child with even extensive
brain damage are fixed and unalterable. For one thing, it may be that even parts
of the brain that are there do not work properly because they are not
getting the input they would ordinarily get from the parts that are
missing. But these parts may eventually adjust to that absence and start
functioning. Then there are various forms of learning and so-called
plasticity at every level of the nervous system, including the brain stem.
Needless to say, in all these instances, stimulation, the opportunity for
exercise, and loving care are what allow the potential functional capacity of
the child's neural equipment to emerge. (Dr Bjorn Merker)
Yes. It's becoming more and more
common to have a diagnosis before the child is born. Unfortunately, a down side of this,
is that Drs then promote that the parent terminate the
pregnancy. Often the medical
professionals put a lot of pressure on the family and paint a
very dismal picture of the child's
life.
That's a tough question to answer.
No 2 children with hydranencephaly are alike. The most common problems you see
in the first few months are: hydrocephalus needing a shunt, seizures of various
types and difficulty controlling his/her temperature. Some children have other
difficulties as well such as feeding problems, breathing difficulties or
diabetes insipidus. Others have none of these problems and appear to be quite
normal and healthy. As the children grow more problems may show up; muscle
tightness will likely occur which can be helped by physical therapy, vision,
& eating problems may also show up. There is no set pattern to this
condition. The first year seems to be the hardest for our kids. Those that
survive the first year often live many years. My daughter lived until she was 11
1/2. We have 4 members who are over the age of 20. For more information on the
various conditions/problems that children with Hydranencephaly may have please
see: http://hydranencephaly.com/researchresults.htm
Yes, in my experience children with
Hydranencephaly feel pain like any other child. They also have the same emotions
as any other child. Some children are less responsive than others, but yes they
do experience pain. Parents will come to know how to tell if their child is in
pain. If your child is on a monitor often you’ll see his/her heart rate go up
when in pain. Kayda cried only when in extreme pain, and even then, only if I
wasn’t holding her. |
|
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
|
