Research Several Sources
Research on your own, but don't jump to conclusions. You'll find a variety of viewpoints and even contradictory information. Remember, much of the information you'll find deals with worst-case scenarios.
"A search on the Internet is likely to yield a wide range of information, not all of it reliable," says Morgan. "If it is a known syndrome, we put [the parents] in contact with a local chapter of a support group for that syndrome, a parent of someone with the same syndrome, so they can get connected and learn some facts."
Find a group meeting in your area or look on the Internet for reliable sites such as BabyZone and others with bona fide experts.
Among the couples we spoke with, those whose babies were born with problems inspired us because they demonstrated that it is possible to deal with the situation. We took comfort in the support these parents offered each other.
Do What You Can
Initially you may feel helpless. Focus instead on doing what is within your control.
"Maintain some normalcy with the pregnancy," says Morgan. She advises parents to attend regular childbirth classes, pick out baby clothes, get the nursery ready, and do all the normal things, because you'll have the discomforts and experiences all expectant parents have.
"We give parents anticipatory guidance—talk about possible surgery, specialized healthcare providers," Morgan explains. "If the baby needs surgery, we have them see the surgeon at Children's Hospital, meet with the social worker there, just so they are familiar with the sights and sounds."
Karen Blythe says she found strength for raising her son with Down syndrome through helping other parents just now facing the challenges.
"We considered ending the pregnancy, but Charlie is such a great kid," she says. "I can see myself in the panic expressed by newcomers in our online support group, and when I tell them about our experiences, it helps me remember just how strong we've really been."
Check with Specialists
"Counseling is the first thing we do," Morgan says. Parents often sit down with a genetic counselor and a physician to go over their findings and discuss their risks. If there is a need, the genetic counselor or a nurse midwife connects the parents to a social worker at the children's hospital in the area, and to other resources, so that they can receive more services after the birth.
"Our physicians are pretty aggressive about keeping watch on a mother and a baby," Morgan says. "Extra vigilance. They don't always get paid for it, but they think it's important."
The Other Side
Every pregnancy is an adventure, and there is always an outcome on the other side of childbirth. Hannah Emily was born on May 6. I clipped the umbilical cord myself, and the nurse confirmed the two-vessel cord. So far, that seems to be the only abnormality. We learned that, as with a normal pregnancy, coping with a high-risk pregnancy depends not only on good healthcare professionals, but on forming a good team. We learned that we could cope. So can you.