Writing in  the New York Times Motherlode blog, Meera Oliva says she was devastated when she learned prenatally that the child she was carrying had a cleft lip, but her concerns disappeared as soon as her son, Elan, was born. Now that Elan is six months old and about to undergo his third surgery, Oliva says she and her husband feel their journey “has enriched our lives much more than it has taken anything away.” An excerpt:

… From the moment we saw Elan, we were absolutely in love with him, and with his cleft in particular, and suddenly all of the things to come like surgeries and arm restraints and special feeding bottles seemed much more manageable.

… I think the most shocking thing of all to both of us is how bittersweet it feels to have Elan’s lip fixed. To us, his face doesn’t need any fixing. His smile is so sweet and part of what makes it so cute is its imperfection. His cleft feels like a part of who he is, and yet if Dr. Mulliken does his job right, Elan will grow up and never feel like his cleft defines him, and I guess that’s the way it should be.

But its hard to imagine that now. Because for now we feel a little sad to be saying goodbye to this wide smile that we have loved so much these last six months. So we will make sure to enjoy it as much as we can the next few days, and then we’ll get to work on loving his new smile just as much. I’m guessing that won’t be too hard.

In the Life and Style section of the [UK] Guardian, a lengthy first-person account of a couple who chose abortion after prenatal tests brought a diagnosis of Down syndrome. Nick Hinton reports that the decision gradually tore his family apart. An excerpt:

I spent a lot of time wondering where it had gone so horribly wrong. Was the decision to terminate the pregnancy to blame? Not in itself, though I worried that my insistence on its being Fiona’s decision was something of a cop-out. Perhaps I should have offered myself as more of a sounding-board or even a punch-bag. Fiona never reproached me with a lack of support, or even hinted at it. But that dreadful period undoubtedly opened up a crack between us, a crack that later deepened into a rift that could not be healed.

From the [UK] Sunday Times:

Two mothers share their perspectives on deciding whether or not to terminate a pregnancy after receiving a Down syndrome diagnosis:

Helena Campbell says she could not bear the thought of bringing a child into the world to suffer. She says she knew right away that terminating her pregnancy was the right thing to do.

The older children were devastated that we had lost the baby. But part of my thinking had been that I wasn’t going to be here forever, and somebody in the future would have to be responsible for this disabled child. I didn’t think it was fair to put that pressure on the other children.

… My son wasn’t supposed to be here; that’s what I believe.

Sal Hamlyn writes that she felt pushed to terminate after her son was diagnosed with Down syndrome, but she already felt he was part of her family.

“I can’t pretend the weeks leading up to his birth were easy. There were mixed emotions — but we always had hope. We had tremendous support from family and friends, and from the Down’s Syndrome Association.

… “I thought what happened to us was the end of the world — but it was the start of a whole new one. Life’s never dull with Isaac.”

From the Today Show, with video:

Ginny and Matt Mooney learned before birth that their son Eliot would be born with a rare genetic syndrome called Trisomy 18.  Doctors told them that if their son lived through childbirth, he would probably not survive more than a few weeks. They decided to document and celebrate their son’s short life, producing a powerful video that has garnered millions of views on Youtube.

Eliot lived 99 days; at his funeral, friends and family released one balloon for each day he lived.

The Mooneys have since had a daughter, Hazel. They say they cherish the time they spent with their son, and that his life has changed them for the better.

More info on Trisomy 18 at the Trisomy 18 Foundation.

Linda H. Davis writes in the Washington Post that a tidal wave of autistic children entering adulthood over the next 15 years threatens to swamp social service networks. By 2023, she says, it’ll cost $27 billion annually to take care of them all.

Yet the challenges of adult autism are overlooked, she says, as we continue to focus on whether vaccines cause autism, the need for a cure, and how best to educate children with autism. All we get from the White House, Davis says, is a “worryingly broad, detail-free promise.”

An excerpt:

… In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.

Linda H. Davis is the mother of a 22-year-old son with autism and the author of “Charles Addams: A Cartoonist’s Life.”

From the Waco [Texas] Tribune-Herald:

Jacque Beavers, the mother of a woman who lives at the Mexia State School, opposes the closing of the state’s institutions and says her daughter would have no place to go if the facility were closed.

An excerpt:

Julie has lived at Mexia State School since 1976. Someone must diaper, bathe, dress, feed, and care for her every need.

Julie must be moved by two employees using a harness and mechanical lift device from her bed to the bath, dining room, and to her very large wheelchair many times daily.

Could you care for a person in this condition? I cared for Julie for 12 years. The task got so overwhelming I could no longer do it. The best place for my daughter is the place where she now resides.

Prospective parents need updated information about Down syndrome along with prenatal tests, author says

Journalist Angela Blakston, writing in The Age [Melbourne, Australia], is troubled about the recent recommendation by experts in Australia that all pregnant women should be offered screening for Down syndrome. Blakston fears that universal screening would send a clear message that the lives of people like her son Gabriel are not worth living.

One of my main concerns is the “informed choice” that will become more readily available to women will exist perfectly in theory but will be little more than a subtly biased justification for termination.

… Will uniform national scanning serve to further marginalize people with Down syndrome and their families, particularly those “who knew”? We decried the barbarity of institutionalizing people with disabilities and fully dispensed with that model only two decades ago. Is uniform scanning that different in its intention: dispense with the “problem”, a so-called easy fix?

… My hope would be that any policy developed for uniform scanning would aim to keep abreast of advances in Down syndrome and clearly communicate these changes to expectant parents.

(Photo of Gabriel as a newborn from The Age)