Thinking About Difficult Decisions

The week wait for our second opinion was hard. I was constantly on the edge of tears. No one wants to be told their baby may not be healthy, and I'm sure everyone would deal with it differently.

In the beginning of this pregnancy, Nick and I agreed that our personal choice would be to terminate the pregnancy in the case of severe genetic defects. We had a sequential screening done, which consists of two blood tests at 12 and 16 weeks of pregnancy, and an ultrasound at 12 weeks that measures the nuchal fold--the space behind the baby's neck. These tests can indicate down syndrome (Trisomy 21) or Trisomy 13 or 18, of which the last two are often fatal in utero or shortly after birth. Our results came back with a very low probability of our baby having these chromosomal issues.

Now we found ourselves faced with an even more difficult choice. Something is wrong. It may be nothing serious, it may be mild, or it may be severe. It may result in developmental delays, or cognitive or physical restrictions. This awful gray area gave us no room to breathe, and no room to plan. It was all "What If's?"

What if the baby has a placental issue? Well, then we monitor growth and take him out when he isn't growing. Maybe spend time in the NICU.

What if the baby has an infection? Well depending on that infection, it could result in blindness, developmental delays, mental retardation, or physical deformities. (Holy crap did that accelerate. The only thing stopping blind panic there is that our ultrasound showed no deformities, just lags).

What if the baby has a genetic problem? Well, then it gets tricky. If he had a fatal abnormality, I would probably want to terminate. It seems to me that our responsibility as parents is to keep our babies safe, and the grief of the decision would be less than the grief of knowing he was suffering as he grew or as he was born. There are many syndromes (I believe over 200) and they also range from mild inconveniences to life altering problems. Depending on the severity, we would again consider terminating.

But at 24 weeks, that choice seemed like it may not be a possibility. Many states impose 22 week restrictions for abortions, including the state we are in. There are a few scattered clinics in the United States that will do late-term abortions for fetal abnormalities. We later learned the costs range from $7,000 to over $25,000. The procedure itself is not as bad as the media seems to portray--the fluid or the baby is injected with something that stops their heart, and they pass away inside. Then the mother is given medications that cause her to go into labor, and the baby is delivered stillborn. With my previa, however, I have to wonder if this procedure is even possible, or if it would become even more prohibitively expensive.

This is an intensely personal decision. Our choice to terminate early on in pregnancy for a genetic abnormality was now being tested even further. We have felt this baby move, we have heard his heart, and he has been given a name. We have baby items and are planning a nursery; talk about how we will take him on vacations and to the park; discuss how our lives will be different. We want this little boy. We really, really do.

The thought of having a late-term abortion is wrenching. Aside from the societal prejudices (and dangers--one late-term abortion provider was murdered just a few years ago), it is time-consuming, expensive, and would weigh on me for the rest of my life.

It has to be compared, however, to the costs of keeping a special needs child. Parents of children with special needs are more likely to divorce, have financial trouble, and deal with long-term stress. Usually one parent quits their job and becomes a full time caregiver--doctors appointments, therapies, day-to-day living requirements... our lives would never again be our own. Of course there is no guarantee with a typical developing child, but there is a general expectation of having some more freedom with an "empty nest". The ability to travel, to focus on our own relationship, to give energy to our other potential children... the pros and cons have to be weighed.

My experience with special needs children is low to moderate. I have worked with a variety of special needs in my schooling to get my teaching degree, and volunteered in an after-school program for special needs kids. I enjoyed my time with them--because I was only with them for a few hours. But when I think of the work that they would need in their everyday lives, I feel terrified. A girl I volunteered specifically with had a nurse nanny every day. She was missing parts of her brain and had seizures, was on tons of medication, and was incapable of living without others taking care of her. That is not the life I want for Nick and I.

So we wait. We know that late-term abortions are a possibility up to at least 30 weeks, and some can go up even farther. It would drain our bank accounts and our hearts.

After turning these "what if's" over in my mind... I've had to put them away. We know it is a possibility. We know. And now we have to wait and see what happens. And hope for the best.