Letting a child die: Monica Wesolowska’s memoir

Monica Wesolowska

Monica Wesolowska

Having a child is a life-changing event. But “having a child that is destined to die,” as Erica Jong writes in the introduction to Monica Wesolowska’s moving, lyrical memoir, Holding Silvan: A Brief Life, “must be more life changing still. How do we let go? How do we mourn?” Jong asks.

In today’s world of high tech births, it’s a tragedy that most in the United States will not experience. Yet, however rare, newborns do die. Wesolowska and her husband David, both long-time Berkeley residents, were completely unprepared for the awful news that their newborn son, Silvan, had suffered severe brain damage during delivery.

Wesolowska’s pregnancy had been uneventful and her labor seemed normal. Yet something had gone terribly wrong.

The baby lingered for 38 days and Wesolowska fit in a lifetime of loving in that brief time span. She and David decided soon after Silvan’s birth not to feed him, and they held and loved him as his once plump frame withered and wasted. Making the decision to let Silvan die was not easy — and the ethical considerations form a fascinating part of the book — and yet Wesolowska shows readers how it was really the ultimate act of maternal love.

Far from being a depressing book, Holding Silvan is one of those books you read and cry over and put down feeling that the human spirit is really indomitable. Holding Silvan was published by Hawthorne Books in mid-March.

Berkeleyside did a Q and A with Wesolowska, who lives in central Berkeley with her husband and two sons.

You had an uneventful pregnancy with your first child and a seemingly uneventful delivery. But something went terribly wrong. What happened and what were the consequences?

What went wrong for Silvan has probably gone wrong since humans first gave birth. He was deprived of oxygen during labor. This caused severe and irreparable brain damage. That’s scary because it could happen to any baby, for unknown reasons.

But I don’t want my story to scare parents. For one thing, it’s rare. But also, I think in acknowledging that not every birth goes well, I’m helping to celebrate what does go right in life. Human life is amazing. The fact that death is part of it only makes life more amazing.

You write that Silvan had been trying to die ever since he was born and that you realized you loved him so much you had to let him die. In the United States, the impulse is to keep people alive as long as possible, by whatever means possible. How long did it take you to know that the best thing for Silvan was to let him die? Why was that the right decision? And did that go against any maternal instincts?

The reason I wrote this book was in part because my maternal impulse seemed frontcover-officialcontrary to the stories we normally hear. Parental heroism usually means going to any length to save a child’s life. I wanted to give people another kind of story, another way to love.

When I was a child, I knew a girl who had an accident and became comatose. Once her parents knew that she wouldn’t revive, they made the choice to take her off life support. I was very impressed with this. I knew they loved their daughter. I thought a lot about that choice and wondered if I would have the strength to make the same choice for a loved one.

As soon as I understood that Silvan’s brain damage was so extreme that he would only ever survive through extreme medical intervention, I knew what we had to do. My husband felt the same way. And to our relief, so did the ethics committee at the hospital. They said to us, “Usually parents come to us with the opposite request, to go to such extremes to save their children that we don’t feel it’s compassionate. What you are doing is rare, but we recognize that it’s coming from love.”

You and your husband decided to stop feeding Silvan and he died 38 days after his birth. During that entire period, you tried to hold Silvan as much as possible, or have family and friends hold him. Why was that so important?

For the first 10 days of his life, Silvan was in a coma. Once he revived, he didn’t cry out for food. His brain was too damaged for this instinct to kick in. His brain was so damaged that he probably wouldn’t have been able to coordinate sucking and breathing in order to eat without giving himself pneumonia. Before modern medicine, not eating was the most common way that the human body began to shut down for death. From all the studies, it seems that such abstinence actually creates an analgesic effect. So he wasn’t suffering. In fact, not forcing food on Silvan seemed the compassionate choice.

Since being held is the most comforting thing for most babies, that’s what we did for him. He didn’t react much to it, but he seemed calmer somehow in our arms.  It helped us, too. Holding a newborn brings out such tenderness in most of us. Because we couldn’t hold him every second, we had a policy that anyone who wanted could come to the hospital and hold him. And even people who were nervous about coming to a hospital to hold a dying baby reported to us later that they loved having held him.

I was struck by how you delighted in all the things Silvan had to offer you — the strength of his lungs and heart, his grip, the length of his eyelashes, and the softness of his cheeks. Yet one might not expect it to be easy to love a severely brain-damaged child who was going to die soon. How could you be so joyful at such a difficult time?

I feel lucky that it wasn’t hard for me. But I do know some people hold back when they know they are going to lose someone. A woman at work came to me shortly after Silvan died to tell me that her daughter had a baby who was going to die. She was very upset because her daughter loved this baby so much. My coworker was trying to persuade her daughter to leave the baby at the hospital to die so that she wouldn’t “bond” with it. She said that she herself wasn’t going to meet her grandchild because she thought this would make the loss easier.

I don’t believe that. I urged her to go and meet her grandchild. I told her this would make her feel better. She seemed surprised. But I truly think that loss is easier to bear when we have fully loved. And I believe it’s the right thing to do for the dying.

You and your husband went on to have two more sons after Silvan’s death. How is Silvan still a part of your family’s life?

 Yes, I have two more children. (Can you see me smiling?)

David and I have never hidden Silvan from our children. After his death, we installed a bench in our backyard, a child-sized version of the kind you find in public parks, and we put a little bronze plaque on it memorializing him. We called it Silvan’s bench and when our children were old enough to crawl up to it and sit on it, they called it Silvan’s bench too.

When I am missing him, I go and sit on it. I’m glad for my children to see that I can take time still to love Silvan and that this doesn’t diminish my love for them.

That’s the wild thing about love. You can love one person so fully, and this doesn’t stop you from loving others fully too.

The bench Monica and her husband David put in their Berkeley backyard to remember Silvan.

The bench Monica and her husband David put in their Berkeley backyard to remember Silvan.

How and why did you finally decide to write Silvan’s story? Was it painful to do? Difficult?

I tried for years after his death to fictionalize the loss of a child. Somehow I couldn’t quite convey the horror of what we went through. I was literally midsentence in the third draft of a novel when I began the memoir. It poured out of me in three months.

Compared to the pain and difficulty of caring for Silvan, writing this memoir was nothing. All of the skills I had developed as a writer over the years were called into service to honor Silvan.

In those months, I felt lucky to be a writer, to feel once again the intensity of our love for him. And if my book somehow enables others to feel fully their own love for those around them, I will feel very lucky indeed.

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  • Chris Marx

    Not feeding this child to allow it to die? It’s sickening. I have a child with a disability and I don’t see the compassion in anything this woman did.

  • Tizzielish

    Without knowing anything about the actual situation, you dare to judge and condemn these parents. Shame on you. The child could not eat. What quality of life is there to keep some baby flesh alive through intravenous feeding. Did you read the part where she states that science suggests that such failure to feed has an analgesic (i.e. pain reducing) affect? The child has no quality of life, faced only suffering and, only from the article, I get the sense that the child has no awareness that it was alive. Keeping that alive makes no sense and prolongs needless suffering.

    You seem to think the unique circumstances described in this book applie to any child with a disabilty. Without telling us about your child’s disability, openly sharing as this author has, you have no right whatsoever to judge. Is your child aware s/he is alive? can your child eat on his/her own? Does your disabled child know joy, love, sunlight?

    Shame on you for judging another. Shame on your smug superiority.

  • Judy Takacs

    Tizzleilish. Couldn’t have said it better myself. Thank you.

    This is a brave woman indeed to write about this heartbreaking event in her life. As parents we must make choices for what is best for our children. If we are lucky that choice means to be with them and love them and do everything we can…if we are unlucky that choice means to let what needs to happen happen and relinquish control. It takes so much love to do what is right even if it hurts.

    She did exactly what was right…and if you’re a God-believing person…she allowed God to take him when God wanted to take him.

  • irisandjules

    I won’t judge the parents because I have not read the book and know the details, however, just like Chris it kind of made me sick to hear that the baby had to starve to death (whether it was the right decision or not). I did not see it mentioned anywhere that it was determined that the baby could not eat since they never tried to feed it.

    I happen to know a family whose girl was born with a serious genetic defect, and she was fed intravenously all of her life. She was cared for at home. She lived longer than expected and passed away at 21 years of age. And yes, having known her, I am know that she enjoyed the people around her, sunlight, and love. She was confined to a wheelchair all of her life, she was fed intravenously, and everything had to be done for her. A hard life for the family but they don’t regret one second.

    This may not compare to the baby in question but I thought of it when I read the article.

  • Che Joubert

    I have 3 bio children and adopted four more. One of my grown daughters had a baby a few years ago that died just before it was born, at Alta Bates, and the doctors there were very critical and unfeeling about it, trying to find ways to blame my daughter. It was a nightmare. But you can expect reactions such as those of Chris Marx – people today are often unrealistic, and really, if you read blogs regularly, interested in condemning others just for their own amusement. They leap into the situation and call it ‘sickening’ or ‘disgusting’ or words to that effect, but really they’re only in the conversation as sadists looking for satisfaction. It would probably be good to steal yourself to this quality of contribution.

  • Che Joubert

    It’s always rather amazing to read anecdotes about severely handicapped people who received a lifetime of care, followed by exhortations that all people might well make that same choice. Sacrificing one’s own life for the good of another is a brave personal choice, but it’s just as brave not to do so. When we volunteer to sacrifice our lives for another we are also bringing associated loved ones into the situation, and that isn’t always the most generous or thoughtful thing to do. Also, we’re making a choice for the dependent, handicapped person – is it the right one? Each situation must be handled and assessed by those who receive the mandate to do that.

  • guest

    It is a shame that humane euthanasia is not available in situations like this.

  • another momma

    I have read the book and it is a truly loving story. Keeping a child alive at all costs when his life would be nothing but suffering with no chance to develop is not a loving gesture in my mind. The doctors were clear that the even with the most extreme interventions he would not develop and even the most simple (feeding him) would most likely lead to increased suffering. They made a brave and courageous choice that may be difficult to understand if you havent read the book? Read it! It is amazing and oddly uplifting!

  • Cheryl Asfour

    Wow, what a wonderful story. And even though some lives are supposed to be very brief, I believe the parents were truly parents for those 38 days and beyond. They made a wise choice, in my opinion, because life is about quality, not being put on life support as a newborn.

  • ChaseysDad

    I commend Silvan’s parents and their bravery and love. My son was born with a heart defect so severe that one of the choices we were given prior to his birth (when we found out about the problem) was to give birth to him and allow him to die. They called this the compassionate choice. At that time I thought they were insane calling that compassionate. We chose to bring him onto the world to face multiple surgeries and what would turn out to be incalculable pain and suffering during his 6 years with us. His impact on our lives and those he touched cannot be measured. All who met him were amazed at how full of life a child who’d gone through so much could be. However, I sometimes think that maybe we were selfish in bringing him into the world of pain that he lived through. I know that the day he died God came to rescue him form his suffering. Maybe the compassionate choice really would have been.