Eighteen

When I had phoned her to set up a meeting I told her she could bring the father of the baby or any other support person she wanted. She had told me "The only support I need is the man upstairs," referring, I think, to God and not the upstairs tenant.

She was 36 weeks pregnant, carrying a baby with Trisomy 18, diagnosed by chromosome analysis of amniotic fluid. Her midwife had asked me to speak with her. The midwife said mom didn't believe the diagnosis. She claimed that in a previous pregnancy they told her the baby had Down syndrome and he had turned out fine, with no chromosome problem.

I began our conversation by trying to find out what mom knew, to see what her understanding was. She talked as if she had some denial of the problem, but as we talked further I could tell she really was understanding. I told her the bad news about kids with trisomy 18, that they have multiple birth defects, that 90% die by age one year, that the survivors are severely developmentally disabled. I told her that many people think it okay to not do heroic treatment with these kids, but to let nature take its course, allowing them to die.

Mom was very nice, but she wasn't ready to give up on her child. She wants the baby resuscitated, to see her in the flesh, to see the evidence, I guess, of the Trisomy 18. She said it would then be in God's hands, but let me know she might be open to letting nature take its course.

What a horrible situation for a mother to be in. At a time when she should be thrilled with the impending birth of a child, when she can feel it kicking, living inside her, she has to come to grips with the fact that this is far from a healthy baby, that there will be far from the joy she would have, should have, with a normal baby. Instead of reading brochures about parenting or cribs, she has to read information I gave her about the bad things her child has and support groups to help her cope. Once again, I am thankful for my own healthy children. Once again, I am amazed at the hard, hard things people encounter in life. She'll be on my mind the next few weeks.