Australian Donor Conception Forum

General Category => News & Announcements => Topic started by: Hursty on September 11, 2007, 10:24:02 PM

Title: In Summary Re: Lastest in my life of DC
Post by: Hursty 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty 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?  :-\

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Quinny 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: dadams 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on September 13, 2007, 03:09:32 AM
Yeah - did you see the story re: the age 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Quinny on September 13, 2007, 10:06:47 AM
I think this is the link now:

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Daven on September 13, 2007, 11:35:29 AM

Title: Re: In Summary Re: Lastest in my life of DC
Post by: dadams on September 16, 2007, 10:28:31 PM
Hi Sue,

trust me, everyone pays.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: AllyRose on December 03, 2007, 08:02:34 AM
I look forward to reading it Sue

Title: Re: In Summary Re: Lastest in my life of DC - Reply from Jim McGinty
Post by: Quinny 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.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty 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)

Title: Re: In Summary Re: Lastest in my life of DC
Post by: AllyRose on December 04, 2007, 12:16:24 AM
yes Sue - don't ya just love those government writers - they sure have a way with wonder this country is blaise (sp) about this issue.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty 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!!!

Title: Re: In Summary Re: Lastest in my life of DC
Post by: AllyRose on December 04, 2007, 04:29:01 AM
yes - he's 3 on 30/12 and proving to be such a wonderful joy - and yep keeping me on my toes.

Qld is heating up here - love it - I wish we has daylight saving.

I hate the different stories you get from clinics - mine says I can write letter to donor and letter to other parents of 1/2 siblings but they WILL NOT and CAN NOT make contact on my behalf - they will pass on letters to both parties if they come looking.

But I am told by another mother last week that she approached the same clinic in question again asking for her donor to rethink his anonimity(sp) and give an update medical history - they got back to her saying "we think we have found him via the internet but pschologist has to make discrete contact first".  They apparently told her they will not keep checking back in with her and will only be in contact again should they have definitive information.  But this lady's children were born before 2004 when all those rules changed etc.

to me that is two different stories this clinic is spinning to two different parties.  I got a bit upset at this woman but I just snapped when I saw how differntly her case is being treated.  I honestly didn't mean to snap at her and I hope she finds the information she wants.  I was just so angry at the situation.

Someone had the hide to tell me I'm "too emotional about it all" - well what the hell am I supposed to so sit back and hope it all comes to me.

*sigh* i'm gonna forget about it until next year and enjoy christmas and his 3 rd birthday (LOL - yep shut up and be grateful!!) ;)

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 04, 2007, 07:53:06 AM
3 is such a beautiful age isnt it. So is 5. We are getting so excited about xmas here this year. Jethro was marking all the things he wants for xmas in a catalogue and Andrew said to him "hang on a minute mate - you're up to about $600" to which Jethro replied "no Dad you dont have to worry - Santa just brings it". Got us on that one. $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
That is so typical about you and the other family getting 2 different responses from the same place. I got the same story when I tried to send an anonymous letter to Jethros 1/2 siblings parents (when we thought he did have 1/2 siblings) -"the letter will be kept on file should this other family ever join the register of their own free will" Well to start with the RTC never received the letter (to keep on file) Pivet was going to forward to them. And then why would this other family join the register when they werent given the opportunity to know that there WAS a half sibling out there. Thats even if they are in the 30% of parents who actually tell their children the truth. That last one really has me stumped - how do you not tell the truth to someone you love with all your heart??? And 'your' little man has all those half siblings out there and you're not supposed to get emotional about whether or not you can ever get info for him? Gee it takes alot less than that to get me emotional - life does that to me. Specially at my age.
I wish we didnt have daylight savings here. I am really battling to get Jethro to bed before 9pm and am having to wake him up every morning for kindy and he has gone to kindy without breakfast a few times because he needs to be awake for about an hour before he can (or will) eat. They have friut a morning tea time and come home at 11.30am so he has a good lunch. Really weird school system we have over here too.
He is the oldest in his class and was born the second week of July. There is only about 12 kids in his class and only 4 of them turned 5 this yr. The rest turned 4 before 1st July. Next year will be a strange one because there arent many kindy enrolements so they are putting the new kindies in with the pre schoolers (Jethros class) so some kindies will only be 3 turning 4 in the first half of the year and will be going to school with Jethro who will be nearly 6 - twice their age. I'm glad we will be moving around april / may . AND look out for the final year of high school - Jethro will be 18 and allowed into pubs and have a drivers licence etc.. You think he will be home studying!!!!!!!!!!!!!!!!!!! I hope he will but the situation wont be helping any!
You know wouldnt it be nice to be given the opportunity to sit around a table with the current Health Minister, the fertility clinic we used, and the reproductive technology council and confront them at once? I would love that because Jim McGintys reply to me was so "unknowing" - cause I have done all the things he suggested and know all the other stuff he wrote. They all pass the buck and I bet you even now it will be found that Pivets record keeping is impeccable - it will be just a human reporting error (never mind it was a head embryologist I talked to) and that the nurse already told me the mistake was made when they were transferring information from paper to computer.(about Jethros not half siblings which were his half siblings until I gave them some information).
Whew - sorry - on a roll!............. i will go and shut up and be grateful too.
Have a great xmas and new year and Happy Birthday to Jacob on the 30th.  :D
x Sue

Title: Re: In Summary Re: Lastest in my life of DC
Post by: AllyRose on December 05, 2007, 12:29:20 AM
geez sue - who do we have to pay to be able to sit down one on one in a round table discussion with those persons you mentioned - I guarantee you not one of them would be truly interested in hearing our stories.

ticks me right off - I actually am so grateful peter paid for my airfare to Sydney last year to come to that identity conference - otherwise I would still be sitting here in my own little world happy as larry and none the wiser of the whole picture - if you get my drift.

I'm still happy as larry but a whole lot more aware now.

Besides I got to meet some new friends and find this site too.

Thanks for the birthday wishes - *sniff* MY BABY IS NEARLY 3!!!!

PS - I loved Jethro's reply to Daddy regarding his presents and Santa - classic out of the mouths of babes - so sad that they eventually grow up - I wish we could keep them at this age sometimes.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 05, 2007, 03:31:16 AM
Yep it would cost big bucks to get them all together around a table.(NEVER) :o Why of course they wouldnt want to be shown to be so contradictory of each other!!!! And they wouldnt ever put themselves in a postition where they couldnt blame the other!!!! Give a straight forward answer - geez whats that. ::)
We are dreaming Tricia! The lives of the people they are creating is not in "their" best interests so that I suppose is their excuse for leaving the decisions up to the parents. (us - but then they dont take much notice of us either when we become a little enlightened as to the plights of our children) :'(
Wouldnt you think a half sibling would be just as important as far as biological relatives go as the donor him/herself? And as parents we are responsible for our childrens health and well being yet when we want to give our children all we can - they say oh you arent entitled to that information - you arent allowed to know who your childs brothers or sisters are. What do you think they think we would do if we knew? What a crime to know someone. Far out. >:(
I'm happy too and also majorly more aware now  :D - I just hope that Jethro is happy with what I have done for him and his being once he understands the whole thing. Right now its just a story and a few questions every now and then. I think he understands quite alot of it but hasnt of course got full comprehension of the inplications - yet in some ways I think he does.  8)This is my most important agenda now.
 :-* Sue

Title: Re: In Summary Re: Lastest in my life of DC
Post by: dadams on December 05, 2007, 09:56:02 PM
>Wouldnt you think a half sibling would be just as important as far as biological >relatives go as the donor him/herself?

To me finding half siblings is just as important as finding my biological father - they are all my kin. Although I suppose the father is probably the more pressing issue, because I suppose if I can't find a link to any donor then I am less likely to find any link to any half siblings. This maybe because it is more difficult for myself to be able to link to other donated half sibs through a donor code than the younger generation. But I am equally interested in those half sibs that are from any more normalised relationships he has had and not just those that have been donated.
The father also provides a better "mirror" to look at our own identity and health history.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 06, 2007, 05:53:28 AM
Damian did you ever find out a donor number like so many sperm donors seem to have?
Have you centred your search on just the donor. I spose I'm asking if you have a number you could find half siblings (if they were told of their conception)? Do you know if you have half siblings? Things have change so much since you were conceived that I am just wondering if any kind of record was kept at all eg.donor number. - something to work on. Thats right - the children he conceived as his own and brought up in his home would be just as important as he with as far as a link to your unique family heritage. I wonder like you I suppose if they are also in the same industry. If you work near or with them etc...
I'm not feeling too hopeful of any progress after my letter from Jim McGinty. Quite disheartened actually.
These dc laws are just like the cigarette ones. They know how wrong it is to keep selling cigarettes for all the obvious reasons but they make so much money from this dc people are like the rollies of the human race.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: dadams on December 06, 2007, 09:57:28 PM
Hi Sue,

yes I do have a donor code. Now bear in mind that with the next bit I write that I have constantly heard changing stories from the clinics about what records exist and what do not.
Supposedly there are no donor records to match this code to or a way to link this code to a donor record.
When questioned about whether or not there were any other siblings born from other donations Repromed has failed to answer on numerous occasions. I have also asked them if they can't or won't answer this question and they also do not answer that (notice the difference between can't or won't).
I have questioned them on how they archive these records, how they are flagged when someone comes forward and how they then go about making sure that all the people who need to know this are informed and that ALL records are updated and matched. They also do not answer this question either.
To be quite frank I believe that these clinics are not at all interested in this area  quite simply because it takes away from their core business. Doing this extremely time consuming work means that they are paying someone to do something that they will not see a return in $$$ for. They could care less about the emotional and physical wellbeing of myself or any other adult offspring for that matter. Just so long as they have a happy family picture of you and your new family shortly after birth to use as promotional material.
There, I said it. I know it is cynical but I am yet to see any evidence from any clinic around Australia that have gone out of there way to help an adult offspring from my generation (the older ones - because the younger ones have computer records which makes the job "easier", but I haven't seen much enthusiasm given to the younger ones either - just look at your situation and those stories of others on this forum).

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 06, 2007, 10:43:07 PM
Sorry but I actually laughed (cynically of course) at your opening line "bear in mind with the next bit I write that I have constantly heard changing stories from the clinics about what records exist and what do not" Oh it just happens over and over again doesnt it. Thats why I was so dismayed by the letter from our Health Minister. The clinics are where everywhere get their info from and it changes constantly. Would or could your Health Minister enquire about 1/2 siblings on your behalf? You dont have a register in SA yet do you? I know this might not give you any more info on your "donor" but it could match you with 1/2 siblings - if they know how they were conceived. I know you have been doing this for so long that you have most likely tried everything I could suggest, but I wonder if the Health Minister would help in getting  a straight answer about what records have been kept and also answere the "can or wont" question? Times change and SOME people are beginning to think differently so maybe if you keep going over your steps you may get the right person one day - this is all it takes. Of course the clinics arent interested now, they got their money for you years ago. So do they have a pic of you on their wall? I'd go and take it down if so. Yes well my story is evidence computer records are only as good as the person enterring them anyway - I wonder just how many are wrong and I also wonder how in only half hour they realised they'd been giving me the wrong info. I would give anything to be a fly on the wall.
I wonder what my reply from the RTC is going to be like - much like Jim McGintys I spose. I sent all the same stuff and a letter to them as well. I'm sure Pivet will come out smelling roses while I look like some whining over emotional peri-menospausal nut.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: dadams on December 06, 2007, 11:52:00 PM
My Health minister John Hill could care less about this issue. He has shown time and time again that he does not want to deal with it. We have had a recommendation for 6 years from their own regulatory body for a register and they cannot find the time or money to do it. He keeps palming me off and will only do something if it comes under a national initiative.
He is playing political games with this issue - there is not enough votes per dollar spent in this area to warrant his attention. Doesn't matter that it is the "right thing to do".

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 07, 2007, 04:18:03 AM
Well it now seems quite obvious that W.A.'s health minister is just as interested as yours in establishing a national register. Hey its not their families going through this.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Quinny on December 07, 2007, 06:03:02 AM
I've got no donor code, just a vague description. You know what? The other weekend I was down in Albany getting some things signed by the JP and he said I was a dead ringer for his son! I said, interesting, I don't know who my father is because I am donor conceived. He said, no he wasn't the donor! Hahaha. :) His son is older than me, but too young to have donated. I don't know if there are any familial links to this man or not.

Hursty, at least McGinty helped set up the state voluntary register, so he is seeming to be doing something positive, or at least he has in the past.
Not happy with the current state govt here anyway.

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Hursty on December 08, 2007, 12:43:24 AM
Yes I know he has shown compassion and interest in dc before and along with statements he made when he had laws changed because we met with Cyntra - I cant understand his lack of interest in a national register for dc people. Do they just say things to make themselves look good at the time????

Title: Re: In Summary Re: Lastest in my life of DC
Post by: Quinny on December 08, 2007, 02:14:50 AM
Don't know what his interest would be. At a national level it's not just up to him, all the state ministers need to agree - or else someone in Federal would need to stand up.