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
If 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.
I think that I had a pretty good relationship with the doctors and the nurses because I was there and I was on them, in their faces, all the time, asking "Why? Fine, you're going to do this blood test. What is the blood test? What is it going to show you? What are you going to determine by the results of this blood test?" I was constant, on them, on them, on them. I mean, I would find the doctor, hunt down the doctor, grab him, and say, "In the child's chart it says _____. ... Explain that to me." And he's like, "Well, that's the nurse's writing." And I would say, "I don't care whose writing it is. You're the doctor, you tell me why!" I wasn't afraid to do that. I wasn't one of the people who wouldn't look at the chart because that 's a "private" thing. I don't care. If it's there, I'm the mother, I'm gonna read it, you know? So I was on them constantly, and I wanted them to know that I was there, and I wanted them to know that I wanted to know and I wasn't going to take no for an answer. I think they gave me, I don't mean to say "preferential treatment," but maybe people thought of me as someone to contend with and to be slightly leery of and "If we don't do everything right, we're going to hear about it." And I'm not a nasty person, but I had to do what I had to do for the sake of the kids. ~~Pam
This mom was very assertive, and her style may be different from yours. You can advocate effectively using a variety of styles, as long as you are constructive. Being constructively assertive involves
- Not attacking the doctors and nurses personally
- Sticking to "I" statements
- Assuming that the medical staff has your baby's best interests at heart
- Working toward collaboration, not conflict
For instance, to begin a dialogue instead of a war, try this approach: Instead of saying, "You make me so mad. How could you do that?" try saying, "I am so angry about my baby's setback. Please, can you tell me what happened?"
Remember, as your baby's advocate, it is your goal to be informed, vigilant, and protective so that your baby receives care that you understand, approve of, and agree with. You are supposed to ask: "What are the side effects and risk of this test or treatment?" "Will this hurt -- can you give my baby something for pain?" or "When can my baby medically tolerate kangaroo care?" Assume that you have a right to know and you have a right to object or disagree with care plans when they are experimental, risky, or their outcome is uncertain. When, in your opinion, something is not clearly in the best interests of your child, you can propose another path.
We were a pain, but we felt that was our right, our kids' right. I think they knew that we weren't going to go away, that they had to deal with us -- and that if we weren't satisfied with what was going on, we would seriously question it and we'd call a meeting to figure out a solution or to have them make us understand exactly why they were doing it. They understand that. ~~Betsy
Excerpted from Parenting Your Premature Baby and Child: The Emotional Journey, by Deborah L. Davis, Ph.D. and Mara Tesler Stein, Psy.D. (Fulcrum, 2004), pages 224-227.
Deborah L. Davis, Ph.D. & Mara Tesler Stein, Psy.D. are the authors of Parenting Your Premature Baby and Child: The Emotional Journey, a 2004 National Parenting Publications Awards "Gold Award" winner. They also collaborated on Parent: You and Your Baby in the NICU (2002), as part of the nationwide March of Dimes NICU Project. They.ve been invited to regularly contribute to Advances in Neonatal Care, a neonatal nursing journal; their first article appears in Spring 2005. They are the founding members of Partners in Perinatal and Pediatric Consulting, which promotes developmentally supportive care for babies and parents, as well as collaboration between families and health care professionals.
Dr. Stein is a clinical psychologist in private practice, specializing in the emotional aspects of coping with crisis and adjustment around pregnancy and parenting. She is regularly invited to lecture and give workshops on these issues throughout the country to conferences of physician and nursing groups, doulas, and lactation consultants. Since 1997, she has been consulting with organizations and providing training to health care providers, guiding their efforts to improve the level of psychological support and developmentally supportive care to families during and subsequent to perinatal crisis.
Dr. Davis is a developmental psychologist, researcher, and writer who specializes in perinatal and neonatal crisis, medical ethics, parental bereavement, parent education, and child development. Dr. Davis is the author of four books for bereaved parents, Empty Cradle, Broken Heart (Fulcrum, 1991; 1996), Loving and Letting Go (Centering, 1993; 2002), Fly Away Home (Centering, 2000) and Stillbirth, Yet Still Born (PILC, 2000). She is also on the Board of the Pregnancy Loss and Infant Death Alliance (PLIDA.org) and is regularly invited to write articles for professional periodicals and parent support materials.
Copyright © Deborah Davis and Mara Stein. Permission to publish granted to Pregnancy.org, LLC.