1 donor. 45 kids.

Lack of reg­u­la­tion has cre­ated big ge­netic fam­i­lies now seek­ing each other out

Baltimore Sun Sunday - - NEWS - By Ari­ana Eunjung Cha

BOS­TON — Kianni Ar­royo clasps 8-yearold Sophia’s hands tightly as they spin around, gig­gling like mad. It’s late af­ter­noon, and there are hot dogs on the grill, bub­ble wands on the lawn, balls fly­ing through the air.

The mid­sum­mer re­union in a sub­urb west of the city looks like any other, but these fam­ily ties can’t be de­scribed with stan­dard la­bels. In­stead, Ar­royo, a 21-year-old wait­ress from Or­lando, is here to meet “DNA-in­laws,” var­i­ous “sis­ter-moms” and es­pe­cially peo­ple like Sophia, a cher­ished “donorsib­ling.”

Sophia and Ar­royo were both con­ceived with sperm from Donor No. 2757, a best­seller. Over the years, Donor No. 2757 sired at least 29 girls and 16 boys, now ages 1 to 21, liv­ing in eight states and four coun­tries. Ar­royo is on a quest to meet them all, chron­i­cling her jour­ney on In­sta­gram. She has to use an Ex­cel spread­sheet to keep them all straight.

“We have a con­nec­tion. It’s hard to ex­plain, but it’s there,” said Ar­royo, an only child who is both com­forted and “weirded out” by her ever-ex­pand­ing fam­ily tree.

Thanks to mail-away DNA tests and a pro­lif­er­a­tion of on­line reg­istries, peo­ple con­ceived with do­nated sperm and eggs are in­creas­ingly con­nect­ing with their ge­netic rel­a­tives, form­ing a grow­ing com­mu­nity with com­plex re­la­tion­ships and unique con­cerns about the U.S. fer­til­ity in­dus­try. Like Ar­royo, many have dis­cov­ered dozens of donor sib­lings, with one group ap­proach­ing 200 mem­bers — enor­mous ge­netic fam­i­lies with­out prece­dent in mod­ern so­ci­ety.

Be­cause most do­na­tions are anony­mous, the re­sult­ing chil­dren of­ten find it al­most im­pos­si­ble to ob­tain cru­cial in­for­ma­tion. Med­i­cal jour­nals have doc­u­mented cases in which clus­ters of off­spring have found each other while seek­ing treat­ment for the same ge­netic dis­ease.

While Bri­tain, Nor­way, China and other coun­tries have passed laws lim­it­ing the num­ber of chil­dren con­ceived per donor, the United States re­lies on vol­un­tary guide­lines. That has raised fears that the off­spring of pro­lific donors could meet and fall in love with­out know­ing they were closely re­lated, putting their chil­dren at risk of ge­netic dis­or­ders.

Now the donor-con­ceived com­mu­nity is start­ing to de­mand more gov­ern­ment reg­u­la­tion — so far with mixed re­sults. Ear­lier this year, Wash­ing­ton and Ver­mont be­came the first states to re­quire clin­ics to col­lect donors’ med­i­cal his­to­ries and to dis­close that in­for­ma­tion to any re­sult­ing chil­dren. Sim­i­lar bills have been in­tro­duced in Cal­i­for­nia and Rhode Is­land.

But last month, the Food and Drug Ad­min­is­tra­tion re­jected a pe­ti­tion from a donor off­spring group that sought to limit the num­ber of births per donor, man­date re­port­ing of donor-con­ceived births and re­quire donors to pro­vide post-con­cep­tion med­i­cal up­dates. Peter Marks, di­rec­tor of the FDA’s Cen­ter for Bi­o­log­ics Eval­u­a­tion and Re­search, wrote that such over­sight ex­ceeds the FDA’s mis­sion, which is lim­ited to screen­ing donors for com­mu­ni­ca­ble dis­eases.

Sean Tip­ton, a spokesman for the Amer­i­can So­ci­ety for Re­pro­duc­tive Medicine, which rep­re­sents most of the na­tion’s fer­til­ity clin­ics, said such pro­pos­als would have in­fringed on the right to pri­vacy and to pro­cre­ate, giv­ing gov­ern­ment “con­trol over who has chil­dren with whom.”

“We think these de­ci­sions are best made by the fam­i­lies, not by ac­tivists and cer­tainly not by the gov­ern­ment,” Tip­ton said.

The lack of fed­eral ac­tion has in­fu­ri­ated mem­bers of donor fam­i­lies such as Wendy Kramer, a Colorado woman who penned the FDA pe­ti­tion.

“There is no gov­ern­ment agency that wants to step in to reg­u­late or over­see the busi­ness of cre­at­ing hu­man be­ings,” said Kramer, whose son, Ryan, 28, has so far dis­cov­ered 16 half-sib­lings con­ceived with sperm from the same donor. “As won­der­ful as the con­nec­tions are, there is an un­der­belly. It has re­ally re­vealed how this lack of reg­u­la­tion has had ram­i­fi­ca­tions for real fam­i­lies.” | So far, Moore’s donor has proved elu­sive, but she has been in con­tact with sev­eral of her sons’ ge­netic cousins, dis­cov­ered on an ances­try site.

One of the most im­por­tant rev­e­la­tions of the DSR has been to con­firm the ex­is­tence of pro­lific sperm donors — real-life ver­sions of the Vince Vaughn char­ac­ter in the movie “The De­liv­ery Man” who learns that he fa­thered 533 chil­dren through his do­na­tions.

Many coun­tries set strict lim­its on the num­ber of off­spring a donor can sire. In Bri­tain, it’s up to 10 fam­i­lies; in Nether­lands, 25; in Tai­wan, just one. But no such laws ex­ist in the United States, where the Amer­i­can So­ci­ety of Re­pro­duc­tive Medicine rec­om­mends lim­it­ing live births per donor to 25 per 800,000 pop­u­la­tion — about the size of San Fran­cisco or Char­lotte. In a na­tion of 326 mil­lion peo­ple, that works out to a stag­ger­ing 10,175 pos­si­ble chil­dren per donor.

Con­cerns about pro­lific donors are not the­o­ret­i­cal. Kramer and other par­ents tell their kids to mem­o­rize their sperm or egg bank name and donor num­ber, and to share that in­for­ma­tion with po­ten­tial dates. She knows of a camp coun­selor who stum­bled onto a half-brother while talk­ing with a camper. In an­other case, two women search­ing for room­mates at Tu­lane Univer­sity dis­cov­ered they were half-sis­ters. She friended her donor on Face­book and con­tacted him shortly be­fore her 18th birth­day. They met when he was in Or­lando on a busi­ness trip. She drove to his ho­tel and looked for a man who looked like her.

“When I found him, I didn’t know whether to hug him or shake his hand or not touch him at all. It was re­ally awk­ward,” Ar­royo re­called. “But then he kind of opened his arms into a hug and ac­cepted me. It was kind of re­liev­ing.”

Donor No. 2757 told her he was still work­ing as a pho­tog­ra­pher, that he was sin­gle and that he had no chil­dren of his own. Through Ar­royo, he de­clined to be in­ter­viewed or iden­ti­fied, cit­ing pri­vacy con­cerns.

About a year later, the donor con­nected Ar­royo with her first half-sib­ling: JoAnna Alaia, 20, of Tampa, who works in busi­ness ad­min­is­tra­tion. She’s a twin, but her twin was not in­ter­ested in meet­ing with Ar­royo. So the two women drove all night and met with Donor No. 2757 the next day in his home­town.

Since then, their sib­ling group has mush­roomed. Ar­royo has dis­cov­ered seven half­si­b­lings in Florida and seven more in New York, five in Mas­sachusetts and four in Ge­or­gia. Be­cause Amer­i­can sperm is sold widely over­seas, she has also found half­si­b­lings in Aus­tralia, New Zealand and Canada.

So far, Ar­royo is the old­est, but not by much. There are 10 other 20-some­things. Then there seems to be a decade-long gap be­fore an­other batch of half-sib­lings ar­rived, chil­dren now in ele­men­tary school.

This sum­mer, Ar­royo’s va­ca­tion plans re­volved around meet­ing her donor sib­lings. She, Sophia and Ava spent a few days on Cape Cod with a 9-year-old half-sis­ter from New York who has her donor num­ber tat­tooed on her wrist. Then they hosted a cook­out in the Bos­ton area for the Mas­sachusetts-based fam­i­lies.

Five of Ar­royo’s half-sib­lings were at the re­union: Sophia and Ava, LaRocca-Stravalle and an­other set of twins, Ad­de­line and Vi­vianna Ju­liani, age 8. Ev­ery­one noted the fam­ily re­sem­blance: The laid-back, sporty kids all had wide smiles and prom­i­nent dim­ples on their right cheeks.

Kris­ten Ju­liani, one of the twins’ two mothers, re­counted how a sperm bank sales per­son had rec­om­mended Donor No. 2757 as a “model” donor. She was not thrilled to learn that her donor was so pop­u­lar.

“I don’t feel great about it,” she said. “There should be a cap on sales.”

Ar­royo has mixed feel­ings, too. While every visit with her half-sib­lings has been a blast, she finds it “wor­ry­ing” that sperm banks per­mit so many chil­dren to be born from a sin­gle donor.

“Every time I find a new sib­ling,” she said, “I get anx­i­ety and think to my­self: When is it go­ing to end?”

A few days be­fore she left the re­union, Ar­royo got a mes­sage from yet an­other half-sis­ter. Rylie Hager, 19, is a sopho­more study­ing so­ci­ol­ogy at Tem­ple Univer­sity in Philadel­phia. Ar­royo in­vited her to join a group of half-sib­lings who planned to meet Donor No. 2757 in mid-Au­gust. The first night, they went bowl­ing, and Hager noted that three of the girls were wear­ing the same out­fit: gray tank tops and shorts.

“It’s all re­ally crazy,” she said. “These peo­ple are strangers, but be­cause I’m re­lated to them, they have all kind of ac­cepted me.”

Hager said when she first found out about the size of her group of half-sib­lings, she sent an alarmed text to her mom. “Is that ex­cit­ing to you, or ter­ri­fy­ing?” her mom asked.

Hager replied: “Both.”

Kianni Ar­royo, 21, plays soc­cer with her half sis­ter Sophia, 8. The sis­ters have 43 other half sib­lings.

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