When a disease is donated

Mom's quest to warn daughter's offspring goes to the heart of a thorny debate on sperm, egg donors
By Judith Graham Tribune reporter
11:43 PM CDT, March 26, 2008
Dr. Jennifer Schneider pleaded to be allowed to contact the families whose children were conceived through her daughter's donated eggs. Her daughter had died of colon cancer, she said, and the parents deserved to know.

But the agency her daughter had worked with said it could not help because the paperwork had been disposed of, Schneider said. Such brokers place a high premium on protecting the privacy of donors, who usually are promised their identities will not be disclosed without their express permission.

These conflicting priorities will be on the agenda Friday in Chicago at the first national conference devoted to exploring the creation of a U.S. registry of egg and sperm donors. The discussion promises to be heated as participants debate what data should be included in a registry, who should have access and how it should be managed.Although Australia, Britain, Sweden and a few other countries maintain such registries, U.S. organizations dealing with egg and sperm donors operate with little oversight or coordination of policies. Not all keep good records of who donates to whom. Some will help donors and families make contact upon request; others won't.

As the Chicago meeting approaches, the three largest fertility clinics in the U.S. for the first time say they plan to endorse the concept of a registry, albeit on a restricted basis, said Dr. Charles Sims, medical officer of California Cryobank. The company has prepared a proposal with Xytex Corp. and Fairfax Cryobank.He said executives would suggest that a voluntary registry serve as a long-term archive of information about donors, recipient families and offspring."There's a concern by a lot of people that information linking a child to his or her genetic or biological origins could be hopelessly lost" if sperm banks, egg donor agencies or fertility clinics go out of business, Sims said.But Sims said one major condition must be met: that "all privacy rights are respected.""We get very worried about changing the rules in the middle of the game," said Sean Tipton, director of public affairs for the American Society of Reproductive Medicine. "We are opposed to proposals that remove anonymity."

At least 8,000 babies are born each year in the U.S. from donated eggs or embryos, according to reports from the federal Centers for Disease Control and Prevention.The number of babies born through sperm donation is much harder to estimate because no one is required to report them. A conservative estimate, derived from a 2005 survey of the leading sperm banks, is 5,000 a year. Other estimates put the number in the tens of thousands.No one knows how often donors are contributing eggs and sperm. Many experts believe that voluntary guidelines—a maximum of six cycles of egg donation for women, a maximum of 25 families receiving sperm from men—may not be routinely followed.A registry could track that issue, as well as provide a way to assemble important medical information about donors and their offspring. Wrenching situations have cropped up across the country as families discover that children conceived with donor sperm have devastating genetically linked conditions.

In Michigan, for instance, five donor-conceived offspring were found to share a genetic mutation for severe congenital neutropenia, a rare blood disease. The four families involved all sought medical advice from the same medical specialist and learned that all had used the same sperm donor.This month, Oprah Winfrey's magazine is running a feature on several families who used the same sperm donor and whose children have mild autism or developmental disorders. And in December, the Los Angeles Times wrote of a gay California couple whose young daughter, conceived with a donor egg, developed Tay-Sachs, a fatal genetically inherited neurological disease."Our position is that as much relevant medical information as possible should be kept" in a registry without revealing the donors' identities, Tipton said.

Still, it's unclear how the registry would work in practice.Currently, sperm and egg donors supply detailed family histories and take extensive medical tests before being accepted by an agency or matched with families. But there's no obligation for agencies or sperm banks to determine if donors' medical conditions change later on.If updating donors' medical profiles became an expectation, Tipton asked, who would gather the information and who would pay? If a potentially serious medical problem arose, who would be responsible for alerting other families or donor offspring? What about the potential for legal liability?Nanette Elster, director of the Health Law Institute at DePaul College of Law and organizer of the conference, wondered if there could be a way to ask donors for relevant information even if they have said they want no further contact.For some, an even broader issue is at stake: the fundamental right of children to know where they come from. Already an issue in adoption, the question is emerging now in the world of artificial reproduction.

"It's a scandalous situation," fumed Nigel Cameron, president of the Institute on Biotechnology and the Human Future at the Illinois Institute of Technology. "Children have been regarded as almost entirely instrumental in this enterprise, as if they were there exclusively for the benefit of industry and the benefit of parents. And guess what, this is all about them."On the topic of a registry, Cameron said: "Anything that brings some kind of order into the situation and ensures that children have access to their own genetic and biological information is going to be better."Wendy Kramer is skeptical that the burgeoning and largely unregulated fertility industry has children's best interests at heart. For seven years, Kramer has run the Donor Sibling Registry, a private Internet-based operation that helps individuals or families search for sperm and egg donors."My experience is, I've reached out to sperm banks, donor agencies and clinics over and over, and every time I get no response," she said. "They make it very hard for donors and offspring to share information and make contact, and I think that's wrong."In her view, a voluntary registry won't work because information will be incomplete.

"What we need is mandatory reporting of who's donating, where, how often, what their profiles are, and how many offspring are born," she said.At the very least, experts note, such reporting could help avoid what's called "inadvertent consanguinity"—the possibility that half-siblings, unaware of their biological relationship, would become sexual partners.jegraham@tribune.com

PACIFIER USE COULD CUT CRIB DEATHS BY 90 PERCENT

I am not sure if we knew this already or not -- it came to me via my pediatrician and I thought I would share it with you.

I only wish I had this information when I had my son in 2000, that first year was scary. I can't even begin to tell you how many time I checked his breathing. I think he either slept on my chest, or my hand on his chest for the first 18 months of his life. I was paranoid to say the least of SIDS.

Kaiser Permanente study provides new hope for SIDS risk Using a pacifier during sleep can reduce a baby's risk of Sudden Infant Death Syndrome or SIDS, by more than 90 percent. That's the finding of a new study by researchers at the Kaiser Permanente Division of Research (DOR) in Oakland, California.

While pacifier use has been linked to reduced risk of SIDS for some time, this study finds additional protective benefits from pacifiers, even for children considered at high risk.
The study, published in the on-line edition of the BMJ (http://www.bmj.com <http://www.bmj.com/> ), and upcoming print edition, looked at 185 babies, who died from SIDS in 10 Northern California counties and Los Angeles County from 1997 to 2000. They were compared to 312 normal infants of a similar age and from similar socio-economic and ethnic backgrounds.

Lead researcher, De-Kun Li, MD, PhD, said "Pacifier use has been linked to lower rates of SIDS for some time, but this is the first study to examine this relationship comprehensively and in the context of its interaction with other risk factors for SIDS."

Dr. Li added that pacifiers may help protect an infant because the bulky handle stops the baby from accidentally suffocating in heavy blankets or soft bedding. The handle may alter a child's sleep environment by changing the configuration of the airway passage surrounding the nose and mouth.

The study also finds that the protective effect of the pacifier seems to be greater even when an infant was in an adverse sleep environment (such as sleeping face down or on their side, sleeping with a mother who smoked, or sleeping on soft bedding).

SIDS is the leading cause of death among infants between the ages of 1 month and one year, claiming some 2,500 lives every year in the U.S. In the early 1990s a campaign urging parents to put their children to sleep on their backs helped reduce the number of SIDS deaths by more than 40 percent.

Dr. Li said that although his findings need further research it is possible that using a pacifier could help reduce the number of SIDS deaths even more.

The Kaiser Permanente Division of Research conducts, publishes, and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and the society at large. It seeks to understand the determinants of illness and well being and to improve the quality and cost-effectiveness of health care. Currently, DOR's 400-plus staff is working on more than 250 epidemiological and health services research projects.

The Web Site Is Now Up!

http://parentsviaeggdonation.org/

It's just the start:)

Questions to ask each agency that may make your search for a donor more effective

1. How long has the agency been in business? Are you an LLC?

2. How many donors has the agency matched with recipients in the last year?

3. How many donors are available at any one time?

4. How many pregnancies and live births have resulted in these cycles?

5. What is the agency’s fee for their services?

6. What do you have to pay up front and what do you pay once you have selected a donor?

7. Is the fee refundable if you change your mind about a donor or decide not to proceed with any donors in that agency?

8. What exactly do the fees cover?

9. What is the compensation given to the donor herself?

10. Can she set her own level of compensation?

11. Does the donor undergo psychological screening before being placed on the prospective donor list?

12. Who performs the screening (the agency or another third party)?

13. Does the agency facilitate a meeting between you and the donor if you desire to meet her?

14. Does the agency provide anonymous donors, identified donors, or both?

15. How long are records kept on anonymous donors?

16. Where are these records maintained?

17. Does the agency adhere to the American Society for Reproductive Medicine Guidelines for Oocyte Donation?

18. What is included in the legal contract that the donor signs?

19. What is included in the legal contract that the recipient couple signs?

20. What kind of medical insurance coverage for the donor does the agency provide, and what are the terms?

21. Does the agency provide a service agreement between the agency and recipient/intended parents?

22. How is the recipient parent protected in the event the egg donor doesn't take her medication as agreed?

23. How is the recipient parent protected in the event the egg donor bails half way through a cycle?

24. Does the agency provide a fair refund policy?

Why Didn’t You Pick Me

The numbers are staggering. There are thousands upon thousands of left over frozen embryos sitting in storage. Depending on how you look at this – these could be potentially thousands of little children if given the chance to thrive and grow.

As I talk to couples who have children via egg donation and who have embryos “on ice”, in the “deep freeze” or what have you I hear a lot of the same things, over and over.

“In the beginning we wanted lots of embryos because we knew we wanted at least four children. Now that we have two (we had twins), we are tapped out money, emotionally, physically, and time wise. Two is good. I always thought I’d just donate all my left over embryos to another couple who like us who wanted to grow their family. Now, after I have my two amazing children I am not so sure if I want to do that anymore. These are potentially my children’s siblings that will be wandering the earth.”

“We always said if we have left over embryos we will just donate them. Now that I had my son I can’t even imagine parting with these embryos. These are MINE – I had a baby with my husband, these are OUR children. I just can’t imagine giving them to someone else.”

“I don’t know what to do with our left over embryos. The idea of letting them thaw and die makes me ill. The idea of donating them to science and having them dissected makes me ill. If we donated them to another couple and they had children we’d have another family in our lives and is that in the best interest of us and our children?”

“Can we donate our embryos and not tell our child that he may or may not have another sibling out in the world?”

Is it really just a strand of DNA? Does it really matter to us where our children come from? Many of us really pushed the limits wrapping our minds around the process of egg donation. We have our children, and then we hold our embryos with all our might because we can’t bear to part with them.

So my question is -- If our egg donors didn’t part with their eggs we wouldn’t have our children – so why do we feel so weird about parting with our left over embryos we are never going to use?

The other part of this that makes me say “hmmmm” – and worries me a bit is all these kids who are born from donor embryo. Are they going to have the same issues that some children who are adopted have?

“Why wasn’t I picked the first time around? Why was I donated? Was there something wrong with my embryo?”

Maybe I am reaching – but I don’t think it’s all so black and white. And it’s stuff like this that keeps me up at night.

How PVED Came To Be

After many years of struggling with infertility I discovered through a friend that the technology to have a child through egg donation was available. I was curious, excited, and above all hopeful that this process might be my magic bullet to finally achieving my life long dream of becoming a parent.

As I began my quest to learn about egg donation I became frustrated because clearly there wasn’t a lot of information out in the world, or on the internet for this particular process through ART.

What I needed was education and support. I was also lacking another important factor that I didn’t recognize until I received it – which was empowerment. After searching high and low I found through the American Surrogacy Center as small list called “MVED” or Mothers via Egg Donation. It was this list that became my life line throughout the process of having my son.

Through a series of events this e-mail list or “life line” as it was to me and so many others experienced many technical difficulties and finally ceased to exist for a long time. It was during this time I began to receive many emails from women like myself who felt lost because their life line has been severed. I decided to do what seemed natural and that was to start a sister MVED group on yahoo, and since 2004 we have grown to over 1000 members and their partners and the numbers continue to climb each and every day.

In 2007 we began to be approached by single mothers, fathers, as well as gay and lesbian couples who wanted to know where there place was in all of this. These individuals didn’t feel like they had any safe harbor to receive support, to be educated, or become empowered, and often felt isolated.

My solution to that was to create an organization that would embrace every parent who had chosen egg donation to grow their family no matter where they were in the process or even the world for that matter.

The organization was created to provide an informational, and supportive environment where parents and parents-to-be can come together to exchange information about all facets of the egg donation process with respect to growing their families.

Our mission and purpose is to educate, support, and empower families and individuals who chose to use egg donation to create new life. We offer information regarding agencies, legal and medical professionals, treatment centers, mental health therapists, pharmaceutical companies, and other resources.

Above all, we are dedicated to being a place of safe harbor and hope, giving individuals the opportunity to connect with other parents and parents-to-be who have chosen this avenue to build a family.”

“Wherever you are in the process, there is a place in our community for you."
And we believe that one hundred percent.

I Had A Hunch There Was Something More To This...

I was very excited to see a study published in Fertility and Sterility stating that
Fetal cells remain in the blood of women who had pregnancies with donor eggs for years after they had the baby. For as long as nine (9) years. Which is amazing.

This study went on to say that these findings may impact how we think about using stem cells in regenerative medicine, because the 'foreign' fetal cells are not rejected by the mother's immune system, even in donor egg pregnancies.

Dr William from Brigham and Women's Hospital in Boston went on to say:

"Not only do we want to understand the novel mechanism that suppresses the immune system's surveillance response, but we want to know if these fetal cells can be a source of stem cells later in life for the mother and even for unmatched patients, which could eliminate the need for stem cell banking," Williams said.

The most interesting part for me was this:

"It is also interesting to note that, after a donor egg pregnancy, the mother and child do, in fact, share DNA, albeit at a very low level, and therefore do have a biological connection," Williams added.

This not only warmed my heart but validated so much of what I have thought for many years. We mom's that carry our children regardless of whether or not it's our egg or someone else's contribute so much to our children.

And really how can we not?

I am very happy about this:):)