In My Own Write: Holding the heart

A friend confided to me that she was concerned about her sister, who had just given birth to a little girl with Down Syndrome. "I'm worried about her state of mind. She seems to be in denial, behaving as if the baby was normal. I'm wondering how she will cope when the reality hits." I ventured that denial might be a necessary stage in the acceptance process. "It's too big a thing to embrace all at once," I surmised, "and so she has gone into shock, like people do after a traumatic event. It shields her from the full force of what has happened, but that doesn't mean she isn't coming to terms with it inside." NAMED after John Langdon Down, the British doctor who described it in 1866, Down Syndrome is caused by genetic overabundance: an extra copy of chromosome 21. Incidence is estimated at one in 800-1,000 births, with mothers over 40 at significantly greater risk. Children with Down Syndrome are recognizable by their flatter faces and upward-slanting eyes. They are slower to develop and usually have trouble learning. They may have specific medical problems that need attention. Various tests carried out during pregnancy can indicate Down's, though not definitively. There's a protein blood test; a urine test; an ultrasound to see the thickness at the back of the fetus's neck; and a look at the nasal bone structure. Two tests are definitive: an invasive test in early pregnancy called CVS; and amniocentesis in the third trimester, involving the extraction of a small amount of amniotic fluid from the sac surrounding the fetus. This used to carry a worrisome risk of miscarriage, now considered negligible. Nevertheless, my friend's sister opted not to undergo the procedure - an attitude which, by implication at least, elicits some sympathy from Alasdair Palmer, columnist and public policy editor of London's Sunday Telegraph. IN A March 21 article written 50 years after the syndrome's cause was identified (in 1959, by Prof. Jerome Lejeune) and titled "The prejudice persists over Down's Syndrome," Palmer noted that while children with Down's "used to be written off as hopelessly stupid and incapable of benefiting from any form of education... not infrequently abandoned by their parents and left in the care of institutions, sometimes in horrifying conditions, it is now recognized that they benefit enormously from being integrated as far as possible with everyone else. "In fact, as thousands of people with Down Syndrome have demonstrated, it need be no bar at all to learning to read and write, to being able to do arithmetic, to getting a job, or to leading a fairly normal life." However, Palmer noted that modern society has "yet to recognize that Down Syndrome is not something which has to be avoided or hidden," bemoaning the fact that the UK's National Health Service policy is "still based on the idea that the birth of a baby with Down's is an unmitigated disaster. "Every mother over the age of 35 is offered a test which aims to detect if she is carrying a child with the syndrome; and every mother whose fetus tests positive is offered an abortion." This, Palmer agrees, is sensible, since "raising a child with Down Syndrome is enormously demanding, and some will not feel capable of doing it, or want to do it." What is wrong, he says, is "that the process includes nothing at all which suggests that having a child with Down's need not be a disaster; that it can be rewarding. "At the level of policy, it is assumed that the experience is best avoided." ASK Israeli Americans Chaia Gilbar and her husband, Ncoom, to describe their seventh child, 10-year-old Laivav, and you will hear the word "awesome." "I learned happiness from her," Chaia says. "She broadened my horizons. Until she came along, I felt I had a family that was picture-perfect. She's helped us to grow." Laivav goes to a regular school in Shilo - she's in third grade, two years behind her peers - and an aide accompanies her a lot of the time. She goes for developmental, speech and physical therapy, and the school supplies occupational and pet therapy. She had reading "under her belt" a couple of years before starting school and "gets on very nicely with the other kids, who take care of her and enjoy her," Chaia says. "She'll make five or six calls to people to come over and play." Parents have come up and thanked the Gilbars for the opportunity to have their kids know Laivav, she adds. But "it quickly became apparent that her level was not on theirs, that understanding abstract things is much more difficult for Laivav. Yet she is getting an education in being with other people in society. She's quite sensitive to my moods, and others'." And in that, she is a pro. For example, her kindergarten teacher lost her husband. "The other children knew, and with them it came and went; but Laivav would sit down beside her and hug her. I called it 'holding her heart.'" Chaia also didn't go for pre-natal Down's testing. "It was my last pregnancy, and I wanted to enjoy it. It was a lovely birth. "Then, the first two days after, I spent a lot of time crying. But we got lots of support, including from our other children." The most important thing, she says, "is to create a positive environment and build a very loving bond with the baby, because that will be the basis for everything else." A CHILD with Down's requires a lot of work and tremendous amounts of patience, Ncoom says. "It helps that we in Shilo are a religious community - we believe that God gives us what we need even if we don't understand it at the time." He says he hasn't figured out how to explain to Laivav that she's different. "Marriage? I don't know. We have great experience with a Down child up to age 10. After that... if a problem arrives, we'll deal with it. If not, we won't go looking for it. "This is a child who will never go to university," he reflects. "I suspect she might work as a helper in a kindergarten. But nobody really knows what anybody's future is." IN a piece written a year ago titled "Scales of worth," I asked how one might begin to measure "human worth" in a world - especially a Jewish world - where intellectual achievement and material success are prized almost above all. Children with Down Syndrome, it is clear, will grow up to be neither scholars nor scientists, nor astute businesspeople. But I've sat in restaurants that employ young adults with special needs and observed them, neatly attired, polishing and arranging cutlery, stacking plates and doing other necessary work quietly and efficiently - not just concentrating totally on the task at hand, but glowing with visible pride and pleasure in the jobs they are doing. Such workers, the manager of one of these equal-opportunity enterprises told me, "have good relationships with the other employees and are considered valuable members of the staff." Rightly so. 'NORMAL' people erect all sorts of barriers to communication. It's taken me half a lifetime to learn that the only true way to connect with others is to bring all parts of myself to the encounter, without fear; to work not just from the head, but from the heart. Like Laivav. MY friend informs me that her sister, the new mother of a "different" child, is no longer in denial. "She now describes her little daughter as 'the most normal Down Syndrome child in the hospital,' where the baby is currently recovering from an operation to widen the passage from the stomach to the duodenum so that she can digest food. "Some holes in her heart were also discovered during pregnancy - but they mostly closed before the birth, and there is reason to hope they will close completely during the first year. "Our mother has visited, and is totally charmed by her youngest grandchild." My friend smiled. "I think my sister will cope."