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Author Topic: In Summary Re: Lastest in my life of DC  (Read 16151 times)
Hursty
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« on: September 11, 2007, 10:24:02 PM »

1. I advertise for a donor and one comes forward "specifically in response to our story" to donate eggs to us through our fertility clinic.

2. I receive 10 of 18 eggs collected from my egg donor. I am not informed at any time that I will be egg sharing.
After meeting my egg donor (Cyntra) she tells me she specifically told the clinic another couple  could have some of her eggs BUT ONLY after I had achieved a pregnancy and live birth.
The significance of this cannot be underestimated. It is not possible for a clinic to guarantee that I would have a child with only part of the eggs collected.
What if I had not succeeded in getting pregnant from the 10 eggs? Once the other eggs are given away, they are fertilised by another mans sperm. There is no way to retrieve these eggs.
I would never have known that I did not receive all the eggs from my donor.
The ONLY way I did find out was because I joined the voluntary register after carrying my son - just prior to meeting Cyntra (against the law)
3. The clinic also failed to pass on important medical information to all recipients about a life threatening allergy of the donor. The donor gave this information to them at the time of the donation. She wears a medic alert bracelet and had to disclose this information before having her eggs collected.
This by-passed all health information collection procedures by the clinic. It is extemely lucky this did not become a tragic mistake. A child who unknowingly inherited the allergy from Cyntra in an emergency (such as a car accident) who is administered a common anaesthetic could die from respiratory failure.
4.The clinic did not inform us or the other couple of the potential for half siblings. This could have been done anonymously - and I am very disturbed by the lack of openness and transparency about the process. I am unaware of any legal impediment to passing on an anonymous letter between parents of genetically related siblings through egg/sperm donation. I cannot find a plausible reason not to pass on my letter while they still believed that the children were all related.?

5. Most disturbingly, I have been informed this week that the 2 girls who we understood were conceived with Cyntra's eggs are in fact not. The clinic has now informed us that they (the other couple) failed to conceive with Cyntra's eggs and went on to conceive using donated embryo's.
This information has only come to light through my contact with the clinic as I attempted to pass on the medical information to the other family. (Information that the clinic would not have passed on if my situation is a reliable precedent)

6. There have been so many significant errors and omission of information from our clinic over the past 6 yrs. I am now very doubtful about any information from them. I am also very concerned that future clerical errors may be discovered.
If the clinic cannot reliably keep records about the origins of the children conceived through donor conception, egg donation or embryo donation we have a chaotic, uncontrolled situation.

7. If there is anything to be learnt from this situation, it is that there is an urgent need for comprehensive, independant national registers for donor conception so that these situations cant happen.
Either that or I should "shut up and be grateful" - which is how I think I am "supposed" to behave - instead - I have concern for the human rights of my son and other donor conceived people.

8. At the end of my fertility treatment, Andrew and I donated our 2 remaining embryos. At this time a nurse told us that these embryos would not be used because Andrew and Jethro both have the cystic fibrosis gene and this would not be fair to knowingly pass on this gene to another family. Cyntra does not have this gene so genetically these embryos were safe from CF disease.
I have subsequently found out these embryos were used.
The clinic has assured me that no pregnancies resulted - but in light of the continual reversioning of events that have occurred and the various clerical errors by this clinic, I am left in the position of feeling very unsure that this is the case.
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Hursty
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« Reply #1 on: September 11, 2007, 10:29:08 PM »

Quinny, Tricia and Damian,
Sorry I took the letter off because this is an open forum and thinking about it I thought I had better do that so as Jim McGinty has time to read and reflect on my letter before anyone else who may read this forum. Sorry - it also took off your replies which I didnt know it would do.
Yes Quinny - good luck you never know - your info might mistakenly get put on computer one day. Yes as far as I knew or saw there were computers everywhere at Pivet while I was having treatment so dont know why they would be all of a sudden transferring info now.
Trish - yep what a mess hey! Just dont know whats going to happen next.
Anyway the summary I think kind of expains it all do you think?  Undecided
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Quinny
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« Reply #2 on: September 12, 2007, 11:02:47 AM »

Again, wow! So many different versions of things affecting you, Cyntra and Jethro are going around now.

It's very dodgy that Pivet can't sort these things out in a 100% guaranteed manner.
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dadams
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« Reply #3 on: September 12, 2007, 10:51:41 PM »

No worries Sue,
it was probably a good option to do so.
Keep us informed how it goes.
And people wonder why I don't trust the clinics.
Cheers
Damian
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Hursty
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« Reply #4 on: September 13, 2007, 03:09:32 AM »

Yeah - did you see the story re: the age http://www.theage.com.au/news/national/true-love-eludes-internet-daters/2007 about the woman in Perth who met a guy  on the internet and they started dating then decided they were'nt for each other but it turned out he was her sperm donor? They found out cause she asked him if he'd ever donated sperm as her daughter was donor conceived and he said yes. She had a sperm donor number and so when he was in Perth he went to Concept and provided ID and got his sperm donor number and they were the same number that each of them had. Hows that?
But you know the ironic thing - they could have given up before they found out BECAUSE the only thing that didnt match BEFORE he went and got his donor number was his BIRTHDATE and the BIRTHDATE of the donor. The clinic had not recorded the donors birthdate correctly. Had these people decided not to proceed to check it out because the birthdates were different they would have missed the boat!!!! Kind of sucks alot doesnt it. Now a 10 year old girl is happy she has a biological Dad (her parents split up when she was a couple of months old) and some half siblings. How lucky are some people.
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Hursty
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« Reply #5 on: September 13, 2007, 03:18:01 AM »

Anyway to say the least I wasnt at all surprised the information wasnt recorded correctly. There would be millions of mistakes if you took every clinic in Australia and checked it out I bet. I dont trust them at all myself Damian.
Also I was wondering if Andrew and I paid for Cyntras treatment when she donated - wonder if the other couple also paid for "their" donors treatment - since none of us knew each other. Did the clinic get paid twice for the one job??
Makes you wonder doesnt it.
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Quinny
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« Reply #6 on: September 13, 2007, 10:06:47 AM »

I think this is the link now:
http://www.theage.com.au/news/national/true-love-eludes-internet-daters-but-a-father-found/2007/09/12/1189276809728.html
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Donor conceived adult from Perth, Western Australia. Searching for a donor who donated to Dr Colin Douglas-Smith in 1976.
Daven
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« Reply #7 on: September 13, 2007, 11:35:29 AM »

.
« Last Edit: June 25, 2011, 10:43:37 AM by Fiona » Logged
dadams
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« Reply #8 on: September 16, 2007, 10:28:31 PM »

Hi Sue,

trust me, everyone pays.
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Hursty
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« Reply #9 on: December 03, 2007, 01:55:23 AM »

I got a reply from Jim McGinty today. Its too long to type out so I am going to email it to Quinny and ask if he can upload it???
Is that easy for you to do Quinny? Hope so - dont want to be passing on hard jobs!!!!
If its a problem email me back and I'll type it out. Not that its very interesting or exciting - it only states what we've already heard and know but its a reply none the less and they have heard my complaints.
Sue
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AllyRose
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« Reply #10 on: December 03, 2007, 08:02:34 AM »

I look forward to reading it Sue
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Quinny
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« Reply #11 on: December 03, 2007, 10:37:15 AM »

Here is the response:

Thank you for your letter dated 7 September 2007 and the enclosed information outlining your experiences as a parent of a child conceived using donor eggs.

Your letter highlights a number of the many complex issues that can be faced with infertility treatment and donor conception. In particular, the often-conflicting issues relating to protection of identity and claims to information about donor participants.

This issue is also reflected in your view that birth certificates need to "show the truth", with regard to the genetic origin of children created by donor conception. While the importance of disclosure to children about their genetic origin is indeed recognised as being in the best interest of a child (as potential recipients are counselled), the means of this disclosure will be an individual decision for families. There is, therefore, no current proposal to alter the information documented on birth certificates.

As you are aware, some donor offspring and their families have lobbied for a National Donor Register. While it is possible that in the future a national donor register may be established, current Commonwealth, State and Territory statutory limitations would require any such data base to be built on voluntary registrations.

You express significant dissatisfaction with regard to the actions taken by PIVET Medical Centre in its communications with you. While your desire to be informed about any other donor offspring that may be related to your son through donor conception is understandable, under the Human Reproductive Technology Act 1991 there is no requirement for a licensee to provide such information to a recipient parent. However, the Reproductive Technology Council recommends that it may be possible to find out how many offspring and families the donor has contributed to by requesting this information in writing from the Reproductive Technology Register staff. It is arguable that following this recommended process may have avoided the unfortunate situation whereby incorrect information was passed on. Whether this arose from human reporting error, or incorrect record keeping does not appear to have been established. In light of this, I have taken the step of requesting that the Reproductive Technology Council explores PIVET's role in this matter. I hope this may assist in providing some resolution to your experiences.

This matter notwithstanding, I remain heartened by your achievement of your desire to become a parent, and that you have established such a positive communication with the donor of the eggs that resulted in the birth of your son.

Thank you for taking the time to express your concerns to me.
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Hursty
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« Reply #12 on: December 03, 2007, 10:20:39 PM »

Thanks very much Quinny for posting this for me.
I would just like to say that the information I received about Jethro having half siblings as being argueable if I had of followed the correct procedure and gone through the RTC - WELL , I asked the RTC first - THEY told me to phone PIVET and speak to them because this is where the RTC get their information from and I would get more up to date information if I called PIVET direct!!!! Sure got up to date info. (when I had info to give to them that is)
I think I was right - I think i am being told to shut up and be grateful. (re:last paragraph)
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AllyRose
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« Reply #13 on: December 04, 2007, 12:16:24 AM »

yes Sue - don't ya just love those government writers - they sure have a way with words....no wonder this country is blaise (sp) about this issue.
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Hursty
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« Reply #14 on: December 04, 2007, 04:21:46 AM »

yeah Tricia
Its so nice to have another Mum who understands. It just sucks. Who do our children look to for love and truth and guidance on how to become all they can be and grow into loving intelligent adults - WE are doing the right thing - how could we lie and deceive the people we love most in the world and the governments and the fertility clinics all seem to think its ok to stuff up lives like this by giving the option of secrecy and deception so easy to acheive. Why is the truth such an issue? We are expected to tell the truth in EVERY other aspect of our lives, we get put in jail for fraud and yet we arent even entitled to know if our children have 1/2 siblings, our children arent given the respect as human beings to have the truth of their conceptions as mandatory practice. In fact I cant think of one single formal issue that it would be ok to lie about or you would not be at least charged, fined or put in jail with, for knowingly deceiving.!!!! Why is this ok?
How are you anyway? Hope all is going well in QLD and Jacob keeping you fit!!!
Cheers
Sue
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