The Importance of Reporting Your Child’s Birth and Any Medical Issues

In addition to posting on the DSR, it is very important you report all pregnancies and births to your clinic and/or sperm bank. Banks need to be aware of any adverse outcome such as birth defects and suspected/confirmed genetic disorders. Sometimes, the first indication that the donor may be a carrier of a previously unsuspected genetic disease is from a report of a birth defect. Reporting all births also plays a important part in some sperm bank’s efforts to limit the number of pregnancies and or births for any one donor.

Please research these policies before choosing a sperm bank. (Not on the sperm bank’s website, but rather from DSR families’ experiences). For example, parents reported to us that Fairfax Cryobank continued to sell the sperm of the donor with the reported 150+ children, even after being notified by several of the mothers that their half-sibling group was getting too large (when it was at about 60). California Cryobank says that they have implemented some recent policies that are helping them to better follow up with recipients. But reporting births and illness is not the end of the story. Sperm banks desperately need to initiate policies to regularly update all donors’ medical files (even those from ten or twenty years ago) and have both the information, and the ability to then share it, with the families.

And donors, in addition to posting on the DSR, please report any illness or genetic issues that you have found out about since donating to your sperm bank or egg clinic! Our research showed that most donors (96% of egg donors and 84% of sperm donors) have never been contacted for medical updates, yet between a quarter to a third of them said that they (or close family members) did indeed have medical issues that would be of interest to families. Chances are slim that you will hear from your sperm bank or egg clinic, so please take it upon yourself to report any medical issues. Think of the children that you may have helped to create, and how this information could greatly benefit them and their families.

How many of you have called your sperm bank for information on your donor or your offspring, and been told “sorry….the files are in the basement” or “sorry…our old paper files are a pain to access”?

There are several sperm banks who do not have immediate, computer access to their files on donors and offspring. California Cryobank, Idant are the first two that come to mind. Recipients, offspring and donors who call for information are frequently told, “the files are offsite” or “in the basement” and then told how impossible or inconvenient it would be to access them. Then, they are given incomplete information.

Ok sperm banks, it’s time to pull the files, hire a couple of summer interns, and have all your records up to date and complete, immediately accessible via computer, for the families calling in either looking for information, or calling to report information. This is the ethical, right, and responsible thing to do, as you are the guardians of important familial and medical information for thousands of families.

You should have all reported pregnancies and births, and all reported medical information at your fingertips….not in the basement, not offsite, and not inaccessible.

In Choosing a Sperm Donor, a Roll of the Genetic Dice
By JACQUELINE MROZ

Sharine and Brian Kretchmar of Yukon, Okla., tried a number of medical treatments to conceive a second child. After a depressing series of failures, a doctor finally advised them to find a sperm donor.

For more than a year, the Kretchmars carefully researched sperm banks and donors. The donor they chose was a family man, a Christian like them, they were told. Most important, he had a clean bill of health. His sperm was stored at the New England Cryogenic Center in Boston, and according to the laboratory’s Web site, all donors there were tested for various genetic conditions.

So the Kretchmars took a deep breath and jumped in. After artificial insemination, Mrs. Kretchmar became pregnant, and in April 2010 she gave birth to a boy they named Jaxon.

But the baby failed to have a bowel movement in the first day or so after birth, a sign to doctors that something was wrong. Eventually Jaxon was rushed to surgery. Doctors returned with terrible news for the Kretchmars: Their baby appeared to have cystic fibrosis.

“We were pretty much devastated,” said Mrs. Kretchmar, 33, who works as a nurse. “At first, we weren’t convinced it was cystic fibrosis, because we knew the donor had been tested for the disease. We thought it had to be something different.”

But genetic testing showed that Jaxon did carry the genes for cystic fibrosis. Mrs. Kretchmar had no idea she was a carrier, but was shocked to discover that so, too, was the Kretchmars’ donor. His sperm, they would later discover, was decades old, originally donated at a laboratory halfway across the country and frozen ever since. Whether it was properly tested is a matter of dispute.

Sadly, the Kretchmars’ experience is not unique. In households across the country, children conceived with donated sperm are struggling with serious genetic conditions inherited from men they have never met. The illnesses include heart defects, spinal muscular atrophy and neurofibromatosis type 1, among many others.

Hundreds of cases have been documented, but it is likely there are thousands more, according to Wendy Kramer, founder of the Donor Sibling Registry, a Web site she started to help connect families with children who are offspring of the same sperm donor.

Donated eggs pose a risk as well, but the threat of genetic harm from sperm donation is arguably much greater. Sperm donors are no more likely to carry genetic diseases than anybody else, but they can father a far greater number of children: 50, 100 or even 150, each a potential inheritor of flawed genes, and each a vector for making those genes more pervasive in the general population.

The scale of the problem is only now becoming apparent with the advent of online communities like Ms. Kramer’s. “There needs to be oversight, and some regulation of the industry,” she said.It is not known how many children are born each year using sperm donors, because mothers of donor offspring are not required to report their births. By some estimates, there are more than a million children in this country conceived with donated sperm or eggs.

The Food and Drug Administration requires that sperm donors be tested for communicable diseases, but there is no federal requirement that sperm banks screen for genetic diseases. Some of the betters ones do anyway, in accordance with guidelines promulgated by organizations like the American Society for Reproductive Medicine, which encourages sperm banks to test donors for conditions like cystic fibrosis and mental retardation when there is a family history of the disease. Generally, the donor himself is tested, not his sperm.

But compliance with those guidelines is not obligatory, and genetic testing practices vary widely across the United States. Critics of the industry are calling for mandatory and consistent medical and genetic testing of all donors.

“In this day and age, when you have genetic testing available for about $200, there’s no reason sperm banks can’t provide this for clients,” said Ms. Kramer.

The fertility industry, however, has long resisted the idea.
For the Full Article:
http://tinyurl.com/csne2jk