Difficult Decision-Making in the NICU

QUESTION

Dear Experts,

I hope that you can help me. I don't really know what I am asking to "let go" of... the anger, the hurt, the guilt, the bitterness -- all the above I suppose.

Right now I hate my husband. I hate his mom. I hate the doctors. I even hate my own mother who has been dead for over 10 years.

I'm angry -- at God, at myself, at all the above people mentioned and complete strangers that all must buy the same "book of idiotic sayings" to someone that is hurting.

I know you need my story. I delivered my son too soon. My pregnancy was completely normal other than the standard stressors of life in general. He was born at 29 weeks and I swear they must have him hooked up to everything imaginable and some just for show.

I think it would be easier to list the things that are right with him versus all they say are wrong. He can hold on my finger and grasps it not wanting to let go, or is that me. He can't breathe without help, his heart, lungs, intestines, kidneys... you name it.. it probably isn't working right.

The doctors, my husband, his family, my friends and even strangers on a bulletin board are all telling me to let him go. "He'll be at peace." "He won't suffer." "He will never live a normal life and will be a vegetable."

I would give my life for him. I don't understand. No one has any answers as to why this happened and no one seems to want to solve it.

How -- how do they expect me to give up this child that I have nurtured so carefully within me for months. He was just kicking inside of me happily on the ultrasound a few weeks ago. I remember smiling back and promising him that I would let him kick me all he wants for years to come.

I have plans -- plans for rocking him in his room that I was painting frogs, streams, and a little boy fishing on the wall. I really need to finish that soon.

I wanted to teach him to talk. Hear him say mama and dada. Take him for his first trip to the zoo, the park...show him the world.

I don't want to hear "you can have another." I don't want another. I want MY SON. Why is this so hard for people to understand?

My husband has declared me irrational. His family, my friends are ready to commit me. No one wants to listen to ME.

How can there be no life there. His heart is beating. When I put my hand in with him his grasp is so firm. How can they not see that?

I don't know what I'm asking you. I'm sorry. I want something that no one seems to be able to give me. I want simply to crawl into bed, cradle my son to my breast and shut off the world.

Thank you for any advice you have.

ANSWER

We are so sorry that your baby was born too soon and is struggling in intensive care. What you are going through is so painful, and all your reactions, thoughts, and emotions are not crazy, but a natural part of the grief you are feeling over this terrible situation. You share much emotional common ground with other preemie parents whose babies are in critical condition. You are not alone in the way you're feeling.

If the doctors are telling you that your baby is dying, of course you don't want to let go of your son. How can you let go, when you're trying so hard to hold on? Even after a baby dies, letting go is a gradual process for the parent, as she must grieve for what might have been, and she needs time to adjust to what is.

Perhaps what you want, that no one seems to be able to give you, is exactly what you need to ask for, demand even -- the opportunity to "simply crawl into bed," cradle your son to your breast, and shut off the world.

There is a way you can do that. It's called "kangaroo care," where you hold your diapered baby on your bare chest, skin-to-skin, with a blanket over him. If the docs and nurses are worried about tubes and wires, tell them that you're sure they can figure out how to transfer and arrange the medical equipment so that your son can be held by his mother.

If they are fearful that he'll deteriorate, inform them that research shows that once settled, babies do no worse and often do better during kangaroo care than in the incubator or warming bed. If the doctors are telling you that it's "too risky," tell them that there's nothing to lose, seeing as how they don't expect him to survive anyway.

The emotional benefits are so great for both you and your baby, that there can be much to gain, beyond just the physical. Kangaroo care may not save his life, but it can save your sanity, and give you precious memories, whatever happens.

As for your emotional condition, it can help you to understand that all of your thoughts and intense feelings come from the fact that you are a mother. Every cell in your body is devoted to nurturing and protecting your baby son. The strength of your emotions is a sign of your strength as a mother. Your painful feelings, including anger, betrayal, yearning, worry, fear, and sorrow, are all normal feelings of grief over your son's condition and your inability to make it all better. On top of everything, you may feel like everyone is telling you that you cannot, must not try to nurture and protect your baby.

But here's the thing: your baby's doctors, nurses, your husband, family, and friends should be listening to you and supporting you in finding ways that you can nurture and protect your baby. For starters, it might help if your baby's doctors could sit down with you and explain your baby's condition, treatments, and prognosis, and then ask you (rather than telling you) what you believe and feel is in your baby's best interests.

Will aggressive intervention help him survive and thrive, or merely prolong his dying? What do the doctors know for sure, and what are they guessing about? What do you yourself observe in your baby's behavior and responses? Do you need more time to see for yourself what effect intensive care has on your baby? Do you need more explanation of what would take the place of aggressive treatment? Do you need reassurance that withdrawal of intervention is not about abandonning your baby, but about providing comfort care that surrounds your baby with serenity and love? Ask if you can record the meetings with the doctors so that you can better absorb the information they are giving you.

The bottom line is "what is in your baby's best interests." In making medical decisions for your baby, it will help you immensely if others can listen to you talk about your questions, thoughts, and feelings without trying to fix you or belittle you. Feeling heard will help you to feel less like you're backed into a corner, and instead of all your energy being tied up in defending yourself and your baby, you can feel like a respected and effective collaborator and caregiver for your baby.

As you take into account professional opinions, also remember that you bring your mother's intuition, deep emotional investment, and parental devotion into making a decision for your baby, all very important components of this collaborative decision-making process, and your role as mother.

It can also help for you and your husband to sit down with someone who can help each of you talk about your hopes and dreams and wishes for your baby. Talk about your son and your protective instincts. Sharing will help you to see each other's perspective in a new light -- that indeed, you both want what is best for your baby.

Whatever you decide, whether you opt for continuing aggressive intervention or for comfort care, you can request the opportunity to provide kangaroo care, so that your baby son can feel your warmth, hear your heart beat, smell your skin, and know your love -- and so that you can truly feel that "I am your mother, and you are my baby."

Recommended resources:

  • On holding your baby skin-to-skin:
    Kangaroo Care, by Luddington - Hoe & Golant
  • On the emotional aspects of having a preemie:
    Parenting Your Premature Baby & Child, by Davis & Stein
  • On making difficult decisions:
    Loving and Letting Go, by D.L. Davis
  • On coping when a baby dies:
    Empty Cradle, Broken Heart, by D.L. Davis

You're in our thoughts.
-- Debbie and Mara
The Crisis Pregnancy Expert Team

Davis and Stein

Deborah L. Davis, Ph.D. and 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.