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Thread: Organ Donation

  1. #1

    Default Organ Donation

    Hi,

    Iím trying to put this message out as widely as I can, to prompt some thought on the issue of organ donation.

    My baby girl's life was saved in 2004 when she received the gift of a liver. She had just turned one.

    This week I attended the funeral of a baby girl who died just after her first birthday, waiting for a liver transplant. Had a compatible liver been donated two or more weeks ago, she would have had a fantastic chance for a normal life. Instead, she stopped breathing the day after her hospital birthday party, and although rescuscitated, she was then deemed beyond viability for transplant, and she died a few days later.

    It is nobody's individual fault that this precious child has missed out on a life-saving transplant. However, it is the collective problem of all of us that organ donation rates are not keeping up with the medical need in our community.



    The next person who misses out may be our friend, our family member, or any one of us.

    Personally, I am strongly in favour of the opt-out system for organ donation (or presumed consent), but would defend to the end any person's right to opt out without question. We need as many people as potential donors as possible, given the limited situations in which organ donation is possible. The opt-out system is the best compromise I can think of for increasing donor numbers whilst respecting the wishes of those who do not want to donate.

    This of course would require legislative change, and may never happen in this country.

    Please, in the meantime, can we talk early about our wishes regarding organ donation with our family members, so that the need for heartbreaking snap decisions (to donate or not) in the face of unbearable grief is taken away?

    Australians seem to support organ donation, but it is not happening often enough.

    I am heartbroken when I think of the grief of the family of this recently deceased, precious baby girl.

    Thankyou,

    Lynne

  2. #2

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    Do hospitals organise forms for organ donation for infants or is it something the parents have to look into?
    I (think) I would love to give life to another precious one if something unforseen happened to mine....easy to say now though...

  3. #3

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    My DH and I are on the register. If something happened to Amy, we would donate her organs too. Does she need to be on the register or would we be able to express our wishes. This is such a terrible thing to think about and write but I agree there needs to be more coverage on this topic. I donated bone marrow to a baby years ago but unfortunately she died. The bone marrow registry also needs more exposure.

  4. #4

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    Thanks for all of your responses!

    What you're doing already is the most important thing - thinking about it and discussing it within the family. Children can't go on the register, but the main thing is that parents discuss it with each other and try to come to a decision, only to be recalled if the tragic unforeseen happens.

    My family is currently at the Australian Transplant Games in Geelong. There are many people here who have agreed to donate their family member's organs. There is such gratitude in the atmosphere at these events.

    It's so wonderful that you were a bone marrow donor, whatever the outcome was. I bet that the family of the child who received the transplant were just so grateful to you for your kindness, and it would have helped them to cope, knowing that somebody cared enough to give. After I'm finished breastfeeding my youngest, I'm going to donate bone marrow too - I've meant to do it for years! Your post is a great reminder of the need.

    This week, my now healthy 3-year-old Rose will run a 10 metre race in honour of two people: her liver donor, and the sweet little baby girl who died on September 1, waiting for a liver transplant.

    Thanks again for reading my emotional post, and for taking the trouble to respond. It means a lot!

    Lynne
    www.biliaryatresiababy.blogspot.com

  5. #5

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    I just had a look at your blog. I wish you the best for your little girl.

  6. #6

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    Both my Dh & myself are registered Organ donors & I have openly discussed it with family & friends...
    I have told them all that my wishes are for my daughters to bonate too (If we are not here to say so)..

    I think it is a truly important topic for a family to discuss!

  7. #7

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    Natalie and Tracey, Thanks so much for posting your responses. What gorgeous little kids you both have, and I see Natalie that you're in that completely new, wild world of mothering. All the very best to you guys! Lynne

  8. #8

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    Actually, Natalie, I got it wrong, didn't I? You're not new to mothering after all - according to your avatar (atavar? Not sure how to spell it, or if I've even used the right term!) Lynne

  9. #9

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    Lynne, so glad you little girl got her life saver. I was a peadiatric transplant specialist nurse here in Sydney. I am also a huge adovcate of this often delicate subject.
    I know for many it's a hard choice to have to make, and sometimes religion and other beliefs come into it, and I'm totally oK with that, but for the rest of the population - the slogan is, "Don't take your organs to heaven - heaven knows we need them here".
    It's really important you discuss your wishes with your NOK as they are the ones who will ultimatley sign the consent.
    Good luck to Rose in her race Lynne.

  10. #10

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    Hi Lynne
    Thanks so much for sharing this story. I too am passionate about organ donation, DH and I have discussed it many times so that we are both prepared if that situation ever arises. Many people don't realise how many lives can be affected when even one person donates. My dear step mum would have been blind many years ago, and the only reason she has continued sight is due to a series of cornea transplants. It is such a precious gift that will be honoured and treasured by the recipients always.

  11. #11

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    Kim, Thanks! What a great job you have. We got to know Rose's nurses so well, because she lived for more than twelve months in hospital. They are our family, still.

    Rose was the youngest in her running race, and she came last, officially. But what a magnificent treat it was to see her run with great gusto and delight down that track! The stand of spectators was giggling and cheering those little kids like crazy. Rose received a gold medal (first in her age group!)

    Good luck to you!

    Lynne

  12. #12

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    Marydean, you've pointed out the other side of organ and tissue donation - that of vastly improving a person's quality of life, if not actually saving it. It's fantastic to hear of sight restored for your stepmum.

    I've realized that many people I meet have in some way been affected by the issue of organ and tissue donation. It seems that either they have somebody in the extended family who is waiting for or has received some kind of transplant, or who has died before being able to receive one. Or, of course, there are the rarer ones we hear of who have agreed to donate their family member's organs.

    I have a cousin whose wife's organs saved the life or improved the life of eight people. My cousin has received letters from each of the recipients, and those letters mean the world to him.

    I'm really pleased that so many of you seem in favour of this very delicate issue. Of course it's confronting to think of death, but the fact is that we are far more likely to be in the position to require some kind of transplant than we are to donate our organs or tissue. As we know, the opportunities for donation to occur as very restricted, because the donor needs to have undergone brain death and be on life support in an intensive care setting. Only a small percentage of Australians die in those circumstances.

    Thanks everyone. It's great to hear all of your stories.

    Lynne

  13. #13

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    Quote Originally Posted by Shannon View Post
    Of course I am all for organ donation, it pains me every day to think that someone has to pass away for our dear Jessalyn one day though. I wish there were a better way.
    Shannon, we grew up being told that exact same thing...That for my mum to live a new life someone out there would have to move on from this life. It sounds like an awful thing to think and say doesn't it? But for me, being told that as a teenager helped me to appreciate the generosity of a grieving family.

    I had many friends who wouldn't even give organ donation a second thought. But when my mum received her transplant after being on dialysis for 10 years, I had some many peole come and pass on their well wishes and even one friend said he had never thought of donating until he found out about my mum and he will be telling everyone he knows that we should all be donors as well. It really touched me that he said that.

    Nic

  14. #14

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    This is a little old this thread but I thought I would post anyway. I just thought Id let people know about what its like to be a family member of the person that is donating the organs.

    In October last year my mum had a stroke and complete Brain Death was pronounced the next day. On her licence she had opted to donate her organs and I also knew this is what she wanted cos she had a friend who had had a liver transplant so it was talked about a fair few times. Anyway the hospital sends over a consultant from the organ donation place (sorry cant remember her name or what the name of her position is) and they go through what u would like to donate (cos u can pick). I decided I didnt want her face touched mainly cos dad wanted to see her after the operation and I thought that would be yuk. I signed all the papers as did dad and the go ahead was all set from about 7am Friday morning. My aunt and uncle had gotten in the car as soon as they new about the stroke and got to see mum before she went in (they were coming from sydney to queensland) and my aunt didnt want to be there when she was wheeled out so they left. Dad went home to have a shower and was gonna come back as the surgery was supposed to happen at 5pm. I stayed with mum (im an only child I should mention too). At about 3.30pm a nurse, doctor and donor foundation lady came in and said that they couldnt find surgeons to do the operations so they had to postpone them. Please dont think Im being evil here but right there and then I was ready to say "Switch her off. We cant deal with this anymore". I rang dad to tell him and u could tell he wanted it to be over too but he said that he couldnt deal with having to turn her off so let them try and find surgeons. So I gave the go ahead to keep looking all the while knowing the longer this took, the worse chance her organs were going to shut down. The nurse persuaded me to go home have a shower and a nap (id been at the hospital since Thursday 9pm). I went home, found sheets for the relos, ate chinese, threw up, went home to my house, looked in on my daughter who was asleep cos I hadnt seen her in 2 days, had a shower and after the shower the doctor rang to say the sugerys were going ahead a 1am on Saturday. I then went back over to mum and dads to pick up dad to go back to the hospital at about 10pm where we sat and waited. When we got there mum was not doing well at all. Her blood pressure was 220/165 due to her brain being push into her spinal from all the blood in her skull (Sorry too much info there). Then was told that if they couldnt get her blood preasure down, they werent going to be able to do the operation. After coming all this way, all surgeons were put on hold til further notice. For 3hrs they pumped her with so many drugs to get her blood presure down that she became extremely puffed up. At 12:50 they gave the go ahead to do the operation. At 1.15am on the Saturday morning we said good bye to mum and as we walked out all the surgeons were waiting just outside her room and I dont know if any of u have had to go into ICU before but u have to wash your hands going in and going out so they stood there and watched that too. There were people in NSW, VIC and QLD on standby for her organs and everything went smooth with the operation. However her lungs were not able to be donated cos they couldnt find a surgeon to do the operation. So the person on standby for them just missed out. I thought this was really really weird but anyway. She was able to donate her liver, both kidneys and some heart valves. Her entire heart wasnt able to be donated cos there was something no quite right about it.

    About 2 months later I recieved a card from the liver recipient which was nice. Was able to see everything was ok. Only a month ago I recieved another card from one of mum kidney recipients too. Both people are around mums age, have kids the same age as me and have grandkids the same age as my daughter.

    During the 3 days I did ask a couple of general questions to about organ donation. I asked if its a common practise and the nurse said that she only see about 1 out of 10 families say know. Also families really do have the last say when it comes to organ donation too. Not too sure what happens if your on the registry but even though it was on mums licence that she was, it didnt matter.

    Anyway there u go.

  15. #15

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    my husband and myself are both going to be organ donors and if the unthinkable should happen to any of our children we have discussed that as wll and have agreed to donate their organs..

    I think it is important to know where each of you stand incase something does happen..

    I am sorry for the baby girl who died. ((hugs)) to their family..

    I am glad your daughter was one of the lucky ones

  16. #16

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    Thanks for sharing your story Jodie. I'm sorry about your Mum - it must be hard not having her around for you and your family. The delay in surgery must have been quite difficult to deal with. I hope it's of some comfort to know that your Mum helped gave life to others...

  17. #17

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    Quote Originally Posted by lynnecoleman View Post
    I am heartbroken when I think of the grief of the family of this recently deceased, precious baby girl.

    Thankyou,

    Lynne
    We donated our baby girls heart valves, heart sack and other tissue, anything they could use. While it is nice for you to feel sorry for the family and while we are very sad to have our DD go so soon it makes us feel happy that she may be able to help others. If it is the sacrifice of my daughter that helps someone else live then as sad as I am, Iím very proud that she can help someone else and somehow put some of her smile on their faces.

  18. #18

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    i just want to say a massive thankyou to all of you who have or are considering organ donation.

    My little girl had heart surgery when she was 6 weeks old, and a donor patch of heart tissue was used in her repair. without it, we'd be without or gorgoues now 2 year old. and while her heart is again unwell, we now know the options we have and the ability the surgeons hold to use donated tissues and organs. it truley is amazing and the best gift ever given to us.

    we've prepared ourselves now that if anything ever happened to alex, we would donate what we could, and same goes with my hubby and i.

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