[tri-med] Re: What & How we need to discuss with our childrens physicians

Thanks Ruth,
 
I am rewriting this into a format and will be publishing it on our
website.  Look for the finished version sometime later this week or
weekend.

I know several other families visit our site pre-natally so I am hoping
that some will have an idea of what they are up for ... 

Any other ideas on what to add to our site that can help other families
is welcome too.

Janina E. Arritola
http://gregoryarritola.tripod.com 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of Ruth Hadley
Sent: Tuesday, July 18, 2006 10:05 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: What & How we need to discuss with our childrens
physicians

Janina,
   
  Thank you so much for your intelligent, insightful post.  It would
have been so helpful to me during the time Jill was born and initially
diagnosed with T-13. I wouldn't have felt so completely helpless and
unable to comprehend much of what the Drs. were telling us about the
decisions we needed to make.
   
  I wish there was some way we could make this available to all parents
when their babies are initially diagnosed.  If only there was a way to
do that!
   
  Ruth (Jill's Mom 2/9/06 - 2/27/06)
  
Janina Arritola <JaninaArritola@xxxxxxxxxxxx> wrote:
  Regarding what or how we need to discuss issues with our children's
physicians:

There is no sense in ranting on issues that just get us emotional and
get us no where. To take action into our hands we must be willing to do
one step further. I ask you ALL to please read this message slowly as
it CAN AND WILL help with further communications in the medical
community. 

Side note for readers from the Author: 
(I use the words, We, I, You, ... 
please know this is not pointed at anyone 
but rather a message of what the docs need to hear - 
regardless of what type Trisomy we are dealing with 
once again - this mail is not pointed but rather 
steps to taking action
in relation to many past threads)

Yes, I agree with all of you. We can educate. But to be understood, we
have to make sure they don't stereotype us as 'in denial' and for that,
we need to have (1) a well thought out plan of communication and (2) a
level head and (3) a calm voice. If we go in with all the guns, they
get defensive and don't listen nor absorb anything. 

On a side note, in reference to doctors 'not caring enough to find out':
our little Anthony DID have all the tests and we CONFIRMED that it was
his brain stopping first (Central), his breathing immediately, although
he was still exhaling it looked like his heart first ... but breathing
actually came to a stop (when looking at the end of his exhale it
appeared breathing was last ... ) only after his brain was flat lined
(Video EEG with telemetry during episodes). The reason he came back so
many times wasn't because of his heart being so strong (although it was)
but because his brain started again and just picked up where everything
left off. 

Most all doctors are well educated in areas that we cannot deny and we
should not call them un-educated or blaming. We cannot afford to fall
into a category of 'Us' against 'Them'. They will put us in a
stereotype of hysteria and they may shun us. Then how effective can we
be? We have to affirm what they do know. And all us parents need to
realize that a diagnosis is an opinion based on the analysis of
symptoms. This is why you can get a second 'opinion'. This why you
should try to get a physician that is easy to talk to and on your level
of understanding about the care of your child. The science of medicine
is just as much an art. The methodology for making a diagnosis is based
on making assumptions (or hypothesis) and then trying to prove one
variable wrong at a time until you are left with the remaining symptoms
and thus a clearer answer. 

Recognizing that these kids can live, doesn't mean the medical community
will automatically do everything possible for them, you still have to
show them:
- you are not in denial, 
- show them you understand the situation 
- and let them know that as a parent you have to prepare for death and
a full life and everything in between. 
Because of that, 
- you must ask them to support you in your efforts to give your child a
life that is 'as close to normal' given these special circumstances. 

For example. 
- You wouldn't have your child go into contractures so when he is 3
years old in a wheel chair all knotted up like a stereo typical cerebral
palsy child just to say, "It's OK, he has cerebral palsy". NOOOOOO!!!!!
You would do everything possible (like physical therapy) to avoid these
common outcomes so as to give him the best life he can possibly have.
And for that, you need the support of the medical community to help you
document the support your child requires to help him have a better
quality of life. 

Likewise,
- You wouldn't have your child turn blue for long episodes just to say,
"It's OK, he's expected to have severe mental retardation anyway".
NOOOOOO!!!!! You would give him Oxygen as needed to ensure he doesn't
have any slow brain death activity and to preserve the function he DOES
have. And for that, you need the support of the medical community to
help you document the support your child requires to help him have a
better quality of life. 

Lastly,
- You wouldn't have your child go without food or hydration just to
say, "It's OK, he's supposed to have feeding difficulties anyway".
NOOOOOO!!!!! You would provide his basic function and allow the nature
of his syndrome to play out - all the while knowing that YOU WILL NOT
REMOVE HIS BASIC FUNCTION. And for that, you need to CLEARLY
COMMUNICATE and OUTLINE how you describe what you want to sustain his
basic function. 

If the child were over 18 years, he'd have an advanced directive, but
since he is a minor, he has you, his parent. In our situation, we
relied on the basics of bio-ethics in conformity with the Hippocratic
Oath and our Christian faith and said, "We want our Anthony to be kept
clean, free from infection and free from pain as much as necessary and
to be given nutrition and hydration even if through a tube ... to ensure
he lives a dignified life". WE further stated that we understood that
we were being given the option of stopping his medications and nutrition
(almost on a daily basis) and this was emotionally draining for us as if
an uphill battle each day and we wanted the questions to stop. 

WE further stated that we understood the seizure meds and heart meds
were not a hardened requirement for us ... (even through our faith) but
they were to be administered for comfort measures. Anthony deserved to
live a comfortable life, free from pain and unnecessary suffering. WE
understood we had the option to take them away in the future if we chose
to do so. (Although we didn't) But the nutrition and hydration, was
not an option for us. (We had to repeat that several times until we
finally mentioned that Anthony would not die from starvation, by our
negligent action or decision. Then the debate quietly was at rest
without further pressing. 

Once the medical community knows exactly what you want, they are better
able to work within their parameters to give it to you. Especially when
they know how to communicate it the insurance companies, they really are
your first advocate to the insurance company, especially when it comes
to appealing a decision. Each hospitalization is an opportunity of
leverage where you have everyone's attention to discuss the plan of
care. Each day is a snapshot - you make your best decisions with the
info you have. Each new situation or change allows for a cycle back of
the plan of care. 

Once explained in this manner (like the examples above), their really is
no unreasonable request you can make for the best quality care for your
child. Whether it be Oxygen, medical equipment, therapists, nursing
care .... they see that you have no option other than to prepare for
every possible outcome. And for that matter, the success of your child
depends on the success of supporting all your other roles too and you
shouldn't be ashamed, afraid nor scared to ask for support to be
successful in mothering a special needs child! 

The reality will always circle back around to this ... no matter all the
surgeries and interventions and best of intentions, THERE IS NO CURE for
the Trisomy. But we need to be sure we recognize that and they
understand that we comprehend this reality when we talk to the doctors.
What we need to say further is that we want our child(ren) to be treated
with dignity and respect for human life (their Hippocratic oath that
they cannot deny). Further, we need to lay out how far our intervention
will go with our child and we need to let them know we are leaving it
open for discussion in the future as EACH situation arises (each
snapshot is a time for a plan of care review). 

To help you gather your thoughts on how to communicate or outline BASIC
FUNCTION or PLAN OF CARE - feel free to peruse the following resources
... all intellectually respected by the medical community. 

ADDITIONAL RESOURCES: 
- As to what the Christian church says about this, you can look at the
catechism a paragraphs 2277 - 2279
http://www.scborromeo.org/ccc/p3s2c2a5.htm#2277 

- Hypocratic Oath - OLD versus Modern:
http://en.wikipedia.org/wiki/Hippocratic_Oath#Modern_versions_and_altern
atives 

- Euthanasia Definition to Doctors:
http://en.wikipedia.org/wiki/Euthanasia 

- The rights of a child:
http://en.wikipedia.org/wiki/Geneva_Declaration_of_the_Rights_of_the_Chi
ld 

- The Charter for Health Care Workers -
http://www.vatican.va/roman_curia/pontifical_councils/hlthwork/documents
/rc_pc_hlthwork_doc_19950101_charter_en.html 

- Declaration on Euthanasia -
http://www.usccb.org/prolife/tdocs/euthanasia.htm 


Peace and Blessings to all, Let me know if you want to talk!

Janina E. Arritola - mom to littlest Anthony - T13
http://gregoryarritola.tripod.com 



-----Excerpts from Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx On Behalf Of Barbara Farlow
Sent: Friday, July 14, 2006 7:18 AM
Subject: [tri-med] Re: info on respiratory failure at/after birth in
T13's


Hi Caroyn and Steve, 

It is very easy, I think for doctors to write everything off to "central
issues," when the reality is they don't know or don't care to find out. 

Personally, I would be very cautious upon hearing something being blamed
on
"central" issues. My experience is that it could be a cop-out of sorts.
It
seems to me that in many cases, medical treatment or surgery can give
our
kids a chance. It is just a question of how much and having to make the
very
difficult decision of pain vs. expected benefit. 



Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line



                
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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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