DownSyn Forum

karimomtofourgirls

I was wondering about Cord blood... does anyone know if we can use one of our other children's cord blood for our kids with ds (if needed)? Also, what about blood transfusions? Can our kids get typical blood or does the donor have to have ds? What about our kids.. can they be blood and organ donors? Just trying to process somethings and I was wondering how much that little something extra affected these things.

_________________
Kari
Wife to Scott (8/3/91) and mom to Kiersten (5/7/94), Madison (4/1/96), Hannah (11/22/9 Cool

, and Sadie (6/17/04 - ds)

http://teaguetribe.blogspot.com/

TheBradyBunch · Posted: September 22 2010, 11:15 AM Post subject:

As far as I know our children can receive blood from anyone who matches or is able to give blood to them...the donor would not need to have DS..

I'm not sure if they can be organ donors, I'm thinking no but I could be wrong.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

burnsun · Posted: September 22 2010, 11:27 AM Post subject:

I was told no to organ donation and also the likely hood of them being put on the list for a transplant because of the quality of life issue. This was when we were facing our surgery for Miranda's heart.

Recently also told the same information when discussing options for replacing Devon's valve and other parts of heart when needed. He will not qualify for a heart transplant. We can have the valve but he does not make the list to receive one

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

JanetG · Posted: September 22 2010, 2:06 PM Post subject:

burnsun wrote:

I was told no to organ donation and also the likely hood of them being put on the list for a transplant because of the quality of life issue. This was when we were facing our surgery for Miranda's heart.

Recently also told the same information when discussing options for replacing Devon's valve and other parts of heart when needed. He will not qualify for a heart transplant. We can have the valve but he does not make the list to receive one

Ok, this REALLY stirred something in me. I have been on the net researching for the past couple of hours (don't tell my employer!). It seems (logically and legally) that a child, or adult, for that matter, can NOT be discriminated against because of their disability when it comes to being placed on the wait list for an organ.

JCAHO did a paper in 2004 about lack of organ donation in general and the disparity of persons who receive organs. Read here

and there is an organization called The National Working Group on Disability and Transplantation that is supposed to be working on this issue. Couldn't find their website though.

Here is the link to ARC regarding a survey done by the above-group.
here

and here is a story from 2009 about a 15 year old girl w/ Ds who passed away and her parents were able to donate several of her organs. Read here

I hope, obviously, that we never have to venture down this road. If we ever did, though, you can bet I'd be fighting mad if I was told my daughter didn't "qualify" due to Ds and quality of her life....

Just curious what everyone else's perspective is...

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_________________
Janet (45) and Jeff (45)
Joshua (angel) '85 (1 day old)
Sarah-age 23
Jaret-age 6
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)

kittycat3376 · Posted: September 22 2010, 2:32 PM Post subject:

This topic REALLY got going on facebook yesterday so I'm going to copy and paste some discussions I posted on a group a friend started over there. Forgive me, this is going to be quite long.

Quote:

Transplant committees will allow transplants for people with disabilities, but you have to put up a good fight and they always go to the bottom of "the list". People with disabilities will only get an organ if the organ is not a tissue match for anyone else. A lot of doctors see it as a waste of their time to get a disabled person onto the transplant lists because there is such a low chance that they'll get their transplant.

However, if you have a living will you can specify who gets priority for your organs. You can specify that if you are a tissue match for a person with a disability, that person has the first rights to your organ. If enough of us do this, more doctors would fight to get disabled patients on the list with a higher chance that they would get their transplant and a change to the transplant rules and laws would soon follow. Actions speak much louder than words, especially in the ears of a politician.

Stay on the donor list. Have your living will written or amended to state that a person with a disability has priority to your donated organs. You cannot state that your organs can ONLY go to___(with the exception of family members), but you do have a say in which groups get highest or lowest priority. Ffor example: highest priority; a person who is disabled, by birth or accident, through no fault of their own (that last bit will keep some Jersey Shore wannabe who got drunk and fell off his balcony and was brain-damaged from qualifying as highest priority for your organs)/lowest priority; an alcoholic or drug addict who has not been clean and sober for at least 1 year.

Hospitals will allow transplants of organs that don't meet committee standards, such as a heart that has or needs a valve replacement, or any organ from a person with DS, into a person who is otherwise unable or unlikely to receive a transplant if that person is specifically named by the donor or the donor's next of kin, as long as the organ is healthy enough to have a high likelihood of surviving the transplant process and the donor is likely to have a significant amount of added time or a higher quality of life with the donated organ. If David were to die (God forbid), his organs would be rejected by the committees because he has DS, but if one of your children on here was a match and in need of an organ I could request to have the organ donated specifically to your child as long as they are a match.

So if your child ever comes to the point where their only chance is an organ donation get the tissue typing done, even if you cannot get them onto the transplant list, then put out the word into the disability community, so if (again; God forbid) something happens to another of our children we can get that transplant coordinated while the organ is still viable.

What I would love to do, but I don't have the time or the funding, is start an organ registry. Just like the national registry, but of people who are disabled and need organs and people who are willing to amend their living will to give those people priority. If anyone who has the time and access to Bill Gates or Donald Trump's pocketbooks wants to steal my idea you go right on ahead.

And:

Quote:

http://news.bbc.co.uk/2/hi/health/404020.stm

Let me start off by saying that this article is over 11 years old, so the policies described here have seen some change in that time. In fact heart surgeries other than transplants are now routinely done on down syndrome patients with congenital heart defects. I am posting this as an example of the 2 most common arguments given by the medical community for turning down people with disabilities and to demonstrate rebuttals to these arguments should your child need a transplant in the future.

"Greater risk of complications" - Patients with down syndrome have actually proven to have a higher cardiac post-op survival rate than their typically developing peers. The same will likely prove to be true of heart transplant surgeries once there is enough data to examine. People with most other disabilities have similar survival rate statistics to the general population.

"People with disabilities will not be able to cope with the complicated drugs procedure required after surgery" - 90% of people with disabilities are already taking daily medications due to other lifethreatening problems such as seizure disorders, thyroid disfunction and diabetes. In my opinion, a person with a disability is actually less likely to miss a dose of their anti-rejection medications as they and/or their caregiver likely already have a very set medication schedule that the anti-rejection meds. can easily be added to.

Now, in the interests of honesty, there is one valid reason to deny transplants to some people with disabilities. Many people with disabilities already have a compromised immune system that anti-rejection drugs will further compromise. In a slightly compromised patient who just gets a few more colds a year than their typically developing peers, a transplant should not add too much risk, but in a severely compromised patient whose every little sniffle turns into full-blown pneumonia a transplant is highly contraindicated.

If you want to come join the discussion over there, here is the direct link to the group.
http://www.facebook.com/#!/group.php?gid=148509478520263

_________________
http://www.carepages.com/carepages/DavidLucas

kittycat3376 · Posted: September 22 2010, 4:57 PM Post subject:

http://www.mnddc.org/news/newsitems/transplant.html

_________________
http://www.carepages.com/carepages/DavidLucas

karimomtofourgirls · Posted: September 22 2010, 5:41 PM Post subject:

Thank you all for all the links and info. I am going to sit down tonight when everyone is asleep and really read over it.

Do you know if we can use one of our typical kids cord blood for our child with ds (if needed)? It would be our property... it is blood right? Blood, as long as the same type, could be used from someone without the little something extra... right?

_________________
Kari
Wife to Scott (8/3/91) and mom to Kiersten (5/7/94), Madison (4/1/96), Hannah (11/22/9 Cool

, and Sadie (6/17/04 - ds)

http://teaguetribe.blogspot.com/

karimomtofourgirls · Posted: September 22 2010, 5:45 PM Post subject:

and Janet... that article about the 15 year old girl with ds who donated her heart, liver, etc--- that is soooo awesome she was able to donate. It sucks that a person who is able to donate can not also be qualified as a someone worth getting an organ Sad

_________________
Kari
Wife to Scott (8/3/91) and mom to Kiersten (5/7/94), Madison (4/1/96), Hannah (11/22/9 Cool

, and Sadie (6/17/04 - ds)

http://teaguetribe.blogspot.com/

burnsun · Posted: September 22 2010, 6:02 PM Post subject:

transplant stuff is one of the places that rationing already exists.

In relation to Devon it had to do with the scale and him being at the bottom due to the vast variety of conditions he has and the likely hood that yes he will be on the list but always passed over due to them

I specifically asked if Miranda could donate hers if something happened to other kids with DS waiting prior to others and was told in 2005 that it was not allowed...... but things change!

I hope and am glad they do!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

AliMama · Posted: September 22 2010, 8:15 PM Post subject:

Kari, I posted a question about cord blood banking a while back and got some good info. You can check that out at http://www.downsyn.com/phpbb2/viewtopic.php?t=42257&highlight=cord+blood

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-2009

karimomtofourgirls · Posted: September 22 2010, 8:35 PM Post subject:

thank you... that was very helpful!!!

_________________
Kari
Wife to Scott (8/3/91) and mom to Kiersten (5/7/94), Madison (4/1/96), Hannah (11/22/9 Cool

, and Sadie (6/17/04 - ds)

http://teaguetribe.blogspot.com/