By admin on June 25, 2015

Two Donor Sibling Registry posts from yesterday — 

one from an offspring and one from a mom, both about California Cryobank:

1. I was told last year (after exhausting attempts to get information from CCB) that my sperm donor had passed away about five years ago. I had a gut feeling that he had passed before I was even told, so it wasn’t a total shock. My gut feeling thinks it is a car accident. It will be interesting if I EVER find out. However, I still wanted to know how he died and CCB said they couldn’t tell me that information. If the man is dead, what damage could be done? I only wanted to know for curiosity’s sake and for health reasons. Also, if he is really dead I want to know if I have any half-siblings who also might have reported a pregnancy with his sperm. I feel everyone’s frustrations and whirlwind of emotions in dealing with the legalities of the industry. I hope that laws will be changed in the future, allowing easier access to this information. I know very little about him, but what I do know is posted on the DSR in hopes that a half-sibling or someone will come across it. 

C’mon, California Cryobank. This young woman’s biological father has passed away, and you won’t release information to her about the cause of death? As if the cause of death of her biological father doesn’t matter to her both medically and emotionally? You won’t help her connect with any living relatives of the donor who might be overjoyed to know that there are children out there that he passed his genes to? (We have parents of deceased donors on the DSR who long to know the children their son or daughter helped to create). This situation should reach beyond your “policies” and allow for compassion and human decency.

2. My worst nightmare as an SMC was losing my job (which happened), but what we are going through is worse. Since I can remember, I have always waved off most of life’s difficulties, saying, “This is not a problem. A child with cancer, now that would be a real problem.” When I first heard the bad news from our doctor, one week after celebrating my twins’ 6th birthday, I was so devastated that I wanted to disappear. I don’t mean suicide; I am well aware that I am fully responsible for the two children I brought to life. I mean that I wanted to curl up into a cocoon and vanish, so I would not have to see my child go through all that was coming. People kept saying, “Be strong,” and I thought that was ridiculous. I chose to be an SMC and gave birth to twin boys at age 33, got a Ph.D., lost a job and a career and built it up again, lost my house in the process, and have always found the way to keep ongoing. I have been strong my entire life but I could not be strong for this. No one could!

My son’s biopsy surgery was halted because the swollen node on his neck had spread all over his chest, his trachea, his heart, and pretty much through every lymph node in his body. The anesthesiologist was concerned because he had a metabolic disorder so he could not have lipid-based anesthesia and the chest mass made it dangerous for her to use general anesthesia because his lungs could collapse. To use her own words, “A simple biopsy could be catastrophic” for my son.

Not for the first time, I wished I had more information about my twins’ genes. The biopsy was finally performed under a strange type of anesthesia that causes hallucinations. Then the oncologist called me and my family to a private room. I knew.

“Precursor T-cell Lymphoma/Leukemia,” and it was all over his little body, including his blood and bone marrow.

After the initial shock, some of my first concerns were, “Is his twin at risk?” and “Will my son ever get to meet his genetic dad?”

My son had been asking to meet his genetic dad since he was three. At that point, I had two reasons for contacting CCB. In addition to providing more information to my child, I also wanted to know if there were cases of metabolic conditions or autism in his family, since there were none in mine. I found out about my sons’ metabolic condition because by age 2 yrs it was obvious they had speech delays. One therapist referred me to a doctor, the doctor to another specialist, and so on, and all those times I had to repeat over and over, “I don’t know half of my children’s health history, but I will try to find out more.”

I contacted CCB and they were adamant about not contacting the donor or providing me with information about him, going as far as saying that they discouraged contact among donor families and refusing to recommend the Donor Sibling Registry (DSR) to a donor because there was no way to prove that the donor was who he claimed to be, and their anonymity had to be protected as promised above all things until the child turned 18. It made me feel as if I was seeking something forbidden, sinful, and illegal, which I know very well is not the case. My children have an innate right to learn about their origins. Even if they are under 18, they feel a connection to this stranger and so do I.

So I continued to argue my point with the CCB representative, until my insistence led him to transfer me to a genetic specialist. Initially, the genetic specialist tried to be nice, but as our conversation kept going in circles my A-type temper escalated. Eventually it became time for both to give in and meet each other halfway. I accepted that I could not contact the donor and they agreed that they could contact him themselves, to inquire further about his health and bring him in for more testing. So I let them contact him and I waited for a response. And I waited. I spoke and emailed the genetic specialist again a few days later, then a few weeks later, then every few months. I knew it could take some time, that the ball was now in the donor’s court, and that I had to accept his choice, that he might not be ready, but I had no idea how long it could take. The genetic specialist at CCB kept saying the donor had not contacted them back.

When my boys were 3 yrs old a speech therapist and an ENT recommended they get ear tubes. That was their first surgery, the first time an anesthesiologist needed genetic information to choose the correct anesthesia. My educational background includes enough physiology and medicine that I know the dangers related to anesthesia, and some of those dangers are very much genetic. I emailed CCB with more urgency, but obtained the same reply, “The donor has not contacted us.”

By the time my boys were 6 yrs old I had stopped contacting CCB on a regular basis. I had probably contacted them months or even a year before my son was diagnosed with cancer.

I have been in touch with a group of about 12 families of siblings (a total of 21 children) since my boys were 1 yr old. On Facebook we exchange pictures, health information, and watch the children as they grow. The children meet through Skype and the families that live close by meet in person. We are an extended family. I kept them in touch of my son’s condition as it progressed, from the time I thought it was a simple throat infection to the moment his biopsy results came back. They were devastated, as if it had happened to their child, as if their children had the same probability of having the same diagnosis as mine. I once again contacted CCB, this time in tears.

"One of my twins was diagnosed with cancer yesterday. I wanted to report this as part of the medical conditions and ask that now more than ever please, look to contact the donor. I would like him to know that my boys exist, that they are wonderful and beautiful and to give him the chance of getting to know them NOW. 

I know he was probably a student and has now moved and the only email in record might be his student email. Please, do EVERYTHING in your power to contact him. 

We are in the hospital right now and will be for at least four weeks, but as soon as I can get to a printer or pen and paper, I will send that letter to the person you mentioned before. What I ask meanwhile is to get an accurate contact information from him. I want to give both my son and the donor a chance at knowing about each other.

We are still dealing with the metabolic disorder and speech delay (educational autism for one of my boys) but none of those things were life threatening. This new condition is. 

Please, do everything in your power to make sure he is contacted, in person."

Their response was that the donor could only be contacted by the child when he turned 18, and that he would be informed about the medical condition during his next routine update.

Frustrated, sad, and overwhelmed with the demands of my son’s new condition, I stopped inquiring.

C’mon, California Cryobank. This mom is dealing with a very sick child, and you should be doing everything in your power to notify this donor (this medical information might matter to him if he has or will have his own children), and help the mom get all updated medical information. The donor needs to be given the opportunity to connect with this family. We know CCB donors who have never been contacted for your “routine update,” so what does that even mean? If this donor has not responded after 6 years, how do you intend to provide information to the thousands of donor offspring who are thinking they will have the opportunity to connect with their donor when they are 18? This is a medical emergency and again, compassion and human decency should override your “policies.” The “policies” should not just be about your own liability and protecting the anonymity of donors. They should also be inclusive of the best interests and the rights of the families, particularly the donor-conceived children.

And shame on you for not properly educating donors and recipients about the DSR. It is on the DSR that many families have been able to share and update urgent medical information that they would have no way to do otherwise. It is on the DSR that more than 12,275* families and donors have established contact and made lifelong connections, friendships, and relationships, enriching each other’s lives in ways we never could have imagined.

*3,400 people are posted on the DSR under California Cryobank. 3,045 of these people have connected with half-siblings on the DSR and another 230 are CCB donors and offspring (most under 18) who have connected. Many more have connected with CCB donors who are not posted on the DSR, since no donors are “anonymous” anymore with DNA testing and Google.