Serving the Best Interests of Your Child

by Deborah Davis and Mara Stein

I advocate strongly for my children because they don't have a voice, they can't talk for themselves. A lot of times people in the medical professions think they have a job to do and they do it in any way they can, without considering that it's a baby with feelings. Even though babies can't talk, they still have all the feelings you would have if someone was sticking four needles into your head at one time ~~Betsy

JacobIf your baby is still in the NICU, you can be as active as you want in seeing that your baby receives appropriate, sensitive care. Remember that your baby is a member of your family, and you are the parent. As long as your goal is the "best interests" of your child, it is your right to be as involved as you want.

Of course, when the benefits of a medical treatment clearly outweigh the risks, you'll want to (and be expected to) agree to it. But when the benefits don't clearly outweigh the risks, or when the outcome is uncertain or the prognosis is poor, you should be included in the decision-making process. In any case, your informed consent is required for all major or experimental procedures. Aside from life-threatening emergencies, you may be involved in many decisions. You can also request that even the simplest changes in routine care plans be run past you before they are carried out. As an emotionally invested parent, part of your job is to scrutinize your baby's care.

I was worried about the effect that [the medication] would have on him long term. When I was pregnant, I don't think I took regular-strength Tylenol more than five times, and they were pumping all this stuff into him. ~~Micki

They had a lot of X rays. I didn't like that. My mom never wanted us to even get dental X rays. So here were my babies, who weren't even supposed to be born yet, getting X rays every day. I was not very happy about that. But it couldn't be helped. It had to be done. ~~Debbie

When giving informed consent for a treatment or procedure, there is so much to scrutinize. In fact, you may feel overly informed because the hospital has a legal obligation to disclose every possible risk, no matter how unlikely. Reading the long list of dangers, you may feel terrified about permitting your little one to undergo a treatment or procedure. Ask about the likelihood of a particular risk befalling your baby and how the risk relates to the potential benefits. Also ask what is likely to happen if you refuse consent. For instance, transfusions pose potential risks, but if your baby will die without one, then the scale would clearly tip in favor of the transfusion. If on the other hand, your baby will probably do okay without the transfusion, then you might safely opt to refuse permission.

Your advocacy and assertiveness are essential to your baby's care, but some parents fear the effects of advocacy on the quality of their baby's care. You may wonder if being assertive, expressing feelings, posing too many questions, or making demands will cause you to be labeled "difficult" -- and as a result, cause your baby to receive inferior care. But babies are not held responsible for their parents' behavior -- and health care professionals don't perform less competently or lower their standards to "get even." Babies are never denied the best care possible, no matter how assertive, emotive, questioning, demanding, or challenging their parents are perceived to be. in fact, constructive assertiveness can be a benefit to your relationships with NICU staff, and advocacy can improve the care your baby receives.