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Writer's pictureJoëlle de Boer

AMC research and ask questions


I woke up at 7 to go to AMC hospital. Nervous as hell, which I've been feeling since the beginning of the week. At half past eight we went to the AMC. We had arrived at 9am. The stress was pretty much gone. We arrived 1 hour early because we still had to arrange things. First we had to create a client pass. After that, we were shown the way to where we needed to be.


On the way to the department of clinical genetics. Checked in and then we had to wait half an hour. Then we were picked up by the doctor and we went to the doctor's office. We started making a family tree early on what people died of and what diseases there are in the family.


Then we talked for nearly half an hour about things I had long known about cystic fibrosis (CF), then the head of the department came to answer our final questions. They suddenly started to say during the conversation that there is a more extensive package to test for multiple diseases if you are really serious about children and that you test for multiple diseases that are hereditary. But do you want to know?


So I have to make the choice whether I want to know now or not. I do not understand that my half brother was allowed to test immediately after his conversation. Oh well it is what it is. The future is still ahead of me and I can wait until I do a test to find out if I am a carrier or not.

After we visited the department of clinical genetics, we went looking for the department where all the magic happens. The Center for Reproductive Medicine. Unfortunately not exactly at the same place where I was conceived. But in the same hospital. (The department was moved) My mothers and sister were also there. I was here for the third time in my life. At about age 12 I had already been here to apply for my donor passport.


The first time it was not sent. Because probably the person we spoke to hadn't passed it on. I went back to the hospital when I was 13/14 years old to ask for my donor passport and then I had it on the mat at home within 2 weeks

Today was different. My mother asked where we should go to ask for info. But I still knew the whole department completely by heart. We walked to the desk at the very back of the department. A woman sat there and I asked my question. She didn't know if she could answer this. So I had to wait for her colleague to return. That was also good because it was also lunch time so we could also bridge the time ourselves. The last time I was there they said the woman who helped inseminate my mother that she had stopped working.


I had met her the first time I was at the AMC and she was very nice. Then my mother went to the desk where we were to ask if she still worked here. It turned out that she hadn't stopped working at all. She took a break after her grandchild was born. And the retirement age had gone up, so she couldn't stop working just yet. I finally meet her again after 6 years. She has been working there for over 20 years. She has seen many people come and go. And my mothers still remembered them.


My mothers had long conversations with her about the past. And we talked about the meeting with our donor father and half brothers and sisters. And why we were in AMC in the first place. After our conversation we recreated the photo of our first meeting. About half an hour later and I went back to the desk to finally get an answer to my questions. The woman answered my questions, but unfortunately not in the way I would have liked to have them answered. I had some questions.

Question 1 was whether it was possible to know where the home clinic was where my donor father's sperm was sent once for someone. I really wanted to know this. Because it has not been confirmed whether it resulted in to a child, but AMC thinks so and registered it as 1 family and 1 pregnancy. I hope that it is properly registered with the foundation donor data for artificial insemination so that he or she has the opportunity to contact us through the foundation. A donor conceived person I had helped was in about the same situation and her mother was not registered. As a result, she was unable to contact her donor father. She in the end found him through DNA testing.


Question 2 was why a lot of parents and donor children could no longer request information from AMC via e-mail. They say this is because of the new privacy law. And they are no longer allowed to pass on the number of pregnancies that the donor has conceived to parents and donor conceived people by e-mail, but sometimes things are possible over the telephone. But only the donor may request all data. It was also said that the donor data foundation for artificial insemination would be working on making it possible to request the information there. But she didn't know much about that.


Question 3 was why donor conceived people whose donors have donated at multiple clinics (for example if donors have made the switch from AMC and OLVG) are not allowed to request information about the number of pregnancies and the donorcode of the donor in the other clinic. There have been a number of donor conceived people I have helped who did receive the information and were treated differently. For those people it was pure luck, that people who were sitting at the computer at the time thought differently about information at the time. They answer that because if the parents have not been treated in the clinic, they are not allowed to give any information. She said she will pass this on in the meeting about what many donor conceived people have problems with. She said that in the future it should be linked together the information.


Question 4 is whether my donor father's sperm has been used since AMC told their patients in their new patient folders that the number of families was reduced to 12 families, since we are already with 14 families and he has signed for 15 families. They said it is possible that they could use it, but they don't want to say anything about that that I don't like. You give a child who is yet to be born an age difference of at least 19 years from his or her eldest half siblings. And then the youngest does not get to know his half siblings until they are in their 30s. That's impossible?! Apparently not. A donor's sperm may be used until a donor is 56 years old for the first child and 58 for the second child. How ridiculous is that. And when your child wants to meet the donor father 16 years later, then the donor father is 74-76 years old. He is probably the same age as the grandparents of the donor conceived person or maybe even older. Although the average age is increasing and we are all getting older, there is always a chance that the youngest donor conceived person will not have the opportunity to meet their donor father because he may already be deceased. You may have been looking forward to meeting your donor father all of your life, and then you find out he is dead. That's in insane! That age limit must be lowered.

I couldn't have whined much. I wanted to push my point of view to get the information. But I left really in time for my boiling point to be prepared. I really don't believe anything about the privacy law. They just want less administration. previously obtained it a month before you received information because they probably received requests from parents and donor children. Can someone wear if he or she even has time why a number of pregnancies he conceived fall under his privacy according to the AMC woman. And under the privacy of the parents. I mean a name, but I still have a number of pregnancies?


Wtf why that. I mean abroad you can still request these kinds of things through the clinic or through the donor sibling registry. I really don't believe it at all anymore. AMC was a confidential clinic of the AMC. The desk where she sat was next to where all the magic happens.


And then at the end of our conversation, a young man with a jar of semen in his hand walked out of the room. A well-dressed man. Well young, guess maybe just finished his studies. I hope he heard the conversation. Wil 16 years later he also meets his donor children. And hopefully he takes his responsibility too. Will he be the dream donor father or the man who shuns all his responsibilities? The usual, even if I could have just seen my donor father walk out of the same room. Not realizing how many more children he will meet in the future...


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