The most important thing I tell [others going through this] is “Love your baby. This is the moment. It is essential that you love that child as much as you can while the child is here–both for the child’s sake and afterwards for your own.”

Bookmark and Share

My name is Monica. I am 46. My first child was born nine and a half years ago and he died nine and a half years ago. He would have been ten in April. I have two more sons upstairs who are six and eight.

Our decision to have children was intentional. We had been together for ten years. When I turned 35, my doctor asked whether we intended to have children and suggested, if so, that we start trying. All those years of never having an accident, we became pregnant almost immediately. I felt cocky, I guess. I was healthy and fit and happy and glowing.

My labor was pretty typical. It was sixteen hours, which was fine for a first labor. I was pushing and pushing and pushing for two hours, which is again not unheard of for a first pregnancy… The baby had looked fine through all of this, but when I finally pushed him out, there was tons of meconium. He was lethargic, so they whisked him away to give him oxygen and then they brought him back. They said, “Okay, he’s fine!” That was only the beginning.

He was very fussy. I kept saying, “He’s a newborn!” but my mother and husband kept saying, “He seems really fussy.” After eight hours, my OB said, “It’s bedtime. Why don’t you let him go to the nursery and sleep for a few hours? They’ll bring him back to nurse.” I thought I should say no, but it seemed reasonable. Four hours later, a doctor said, “We have to keep him a little longer. He seems to be having little seizures.”

To me, they looked like cute baby moves, but I was exhausted, so I went back to sleep. The phone rang. A receptionist from another hospital wanted to know how to spell my last name. I was so confused. “Why are you calling me from another hospital?” And she said, “You didn’t know? Your baby is being transferred.”

I raced down the hall in bloody pajamas. He was surrounded. He looked fine to me. They said, “He’s on Phenobarbital. That’s why he looks so relaxed. But he’s having seizures and we don’t know why…It’ll probably be okay.”

He went by ambulance to the other hospital. They kept doing tests and every day or so, they’d have some new result. “Oh, we just think he has some bleeding on the brain because of the trauma from the labor, but he’ll be fine.” They kept doing scans. Each time it looked worse.

We’d come home from the hospital at night to sleep. It was always hard to leave him there, but he was asleep himself. Every morning I was terrified when we got a call because I thought they were going to tell me that he had died. I didn’t want him to die when I wasn’t there. On the third morning, the doctor called and said, “We want to have a meeting with you.”

My husband said, “Why? Can’t you tell me?”

He said, “I’d like to tell you in person.”

My husband said, “No, I’d really like to know now.”

He said, “Your baby is brain damaged.”

I fell down. I just fell down and thought, ‘I can’t go on.’ About thirty seconds later, I thought, ‘Of course you can. Your baby’s alive,’ and this incredible joy shot through me and I thought, ‘I get to go see my baby’. We got up and went to the hospital and we had this really horrible meeting… They said, “He was completely deprived of oxygen at some point during your labor”…but he was still alive. Even though there was this incredible, profound grief about what he was deprived of, he gave us joy.

At first, the neurologist said, “There’s such a range in situations like this, you know, he might not be a straight-A student or he might be deaf and blind and unable to move and unable to eat and unable to communicate…”

Finally, one day, the doctor said, “We never like to deprive parents of hope.”

I said, “We don’t want hope. We want the truth.”

He said, “His brain damage is extreme. It would probably take a lot to keep him alive. He is unable to eat. He’s in a coma. He might die any day.”

I suddenly realized that, prior to this century, Silvan would have died right there, at birth. Or he might have been one of those babies, who never wanted to eat, and died within a few days. So, I said to the doctor“If you hadn’t revived him over and over, he would have died. Why can’t he just be allowed to die now?”

The doctor said, “Well, at this point, he’s been revived enough that he’s stabilizing. If we remove his oxygen, he’ll probably keep breathing.”

I said, “But he’s being fed by a tube. Is there no way to let a baby who wants to die, die?”

He responded, “Legally, because he’s in a coma and can’t feed himself, you can withdraw his food.” I was horrified at this idea, but at the same time felt incredible relief. We were holding him constantly. We signed something at the front desk saying who was allowed to come in. We said everybody, and this parade of people—neighbors, receptionists, health care practitioners, a doctor we had never met — wanted to be there for us. I didn’t want him to ever not be held.

We made the choice to let Silvan be removed from all life support. But it got more complex. After a week, he came out of his coma, which we’d been warned could happen as the swelling of his brain diminished. He was able to use his brain stem, which meant he could open his eyes. We don’t know if he could see.

We had to go to an ethics committee and I argued that it was unnatural and wrong to force his body beyond what it wanted. It would have been such a different situation if he had any ability to be present. We got approval from the ethics committee to continue not feeding, and a few days after that, we decided we were strong enough to bring him home. Someone from hospice, a particular hospice that deals with babies and children, agreed to be our home nurse. Silvan came home and he lived here for another week.

All told, Silvan lived thirty-eight days. The love I felt for him was so immense…I’ve loved my other newborns, but knowing he’d only be with us for a few days… I don’t know how I feel about the fact that not feeding a baby is permissible. It was the only way of letting him die. It was agony to watch, but it didn’t seem like he was in agony. Every day was total torture, and everyday I’d think, ‘Thank God he’s here.’

I thought I would die if he didn’t die in my arms, and he blessed me with that.

If we could all die that way we would all be so lucky. We knew his death was imminent, but we didn’t know what day or what hour. We were having lunch. We had a friend over. My friend held him. David held him. We were just talking while I was holding him, and then he felt different. David noticed that I was staring at Silvan. I said, “I, I don’t think he’s breathing anymore.” [Crying]

The shock of being a new mother with all of the emotions that have carried you to that moment… He was going to be the first grandson and the first great grandson on multiple sides.

I had already lost a lot of people in my life. My father had died. My brother had died. My best friend had died, all in my twenties. I had thought that this new baby was a turning point and that my family circle would now start expanding.

I was very familiar with what grief feels like. I treated myself the way I thought I should be treated. I stayed in bed and I looked at his photographs over and over and over. My husband thought that was a bit odd. He didn’t know why that gave me so much pleasure. But it did. He was a very beautiful baby and I would find myself smiling. I thought, “Oh My God, how is this possible that I can still feel such joy at having produced this being who’s no longer here?

So that was the first few days. And then of course I had to leave the house. [Laughs] And that was hard. I was still swollen and looked pregnant. I sent people ahead to various places to spread the news without me having to tell it. I had some encounters with total strangers. They would ask, “Look at you. Did you have the baby?” And I would say, “He died.” [Laughs]. I just felt I had to say it like that. That it would be a total betrayal not to acknowledge him in that way.

Some people totally shut down. You know, they would literally take a step away from me and think of an excuse to split. And other people… there was one woman at the gym. She was standing at her locker when I said, “He died,” and she immediately put her hand out and we both sat down. And I told her the whole story. She is an incredible person.

Biology made me want to move forward with another attempt. I went from having decided to have kids because I thought perhaps I would regret not having them to realizing that the incredible love I felt for my first son… I needed that again.

We had to talk and think really seriously about what would happen if something went wrong again, because we didn’t know if we could live through making that choice again. If we couldn’t, did that mean we made the wrong decision?

How would I comfort another mother going through a similar experience with their first child? I get called by parents in this situation now because we told the hospital we were available. The most important thing I tell them is love him. “Love your baby. Here it is. This is the moment. It is essential that you love that child as much as you can while the child is here–both for the child’s sake and afterwards for your own.”

How have I been changed by this experience of motherhood? There’s something about living through a crisis that makes everything really, really vivid. You feel very alive. Whenever I’ve been in a situation of grief I’ve thought, ‘I will never forget what it feels like to be appreciative of life and the people around me.’ And then as I come out of grief, I start feeling like my ordinary self again. I get irritated that the person in line in front of me isn’t moving fast enough and all those ordinary things.

We had our second son almost exactly a year after we had our first. So his early infancy still had an incredible intensity. I was so ecstatic that he was alive. And by the time I had my third son, I was so much like any mother with more than one child. I was overwhelmed and irritable. And I thought, ‘Ah, I have arrived. I am no longer a grief-stricken mother. I am an ordinary mother.’

But every now and then, almost as a practice, I stop and think: “They could be dead by the end of the day. I’m so glad they are here.”

Monica Wesolowska’s memoir, “Holding Silvan: A Brief Life,” to be published by Hawthorne Books, will be available online and in stores in March 2013. (To read more, visit: http://www.hawthornebooks.com/catalogue/holding-silvan)

 

 

Bookmark and Share

One Response to “The most important thing I tell [others going through this] is “Love your baby. This is the moment. It is essential that you love that child as much as you can while the child is here–both for the child’s sake and afterwards for your own.””

  1. Erin says:

    Thank you for sharing such a powerful, poignant story. In this death-phobic culture of ours, I’m so moved by the bravery with which you fought to allow Silvan his right to die. We often equate love with doing “anything” to keep someone close, but real love requires meeting our grief head-on and not trying to hold on because we can’t bear to face what comes next. To tell his story, and yours– to be able to say the words “he died, out loud — honors Silvan in a way that playing to someone’s discomfort would not. When it comes to death, though, we’re trained to do the opposite, and your courage is an inspiration.

Leave a Reply