Has a child ever saved your life
"Our son died when he was a week old" : How a mother lives with grief for her child
It takes a long time for his heart to stop. More than an hour. The doctor asked if we wanted to hold him and warned us: This dying will not be quick. He explained that the sighs we will hear are not breathing, not a struggle for air, but a reflex. Maybe it's scary to die. Even if he, who is in our arms, still has no idea what fear actually means.
We sit still like statues. With every sigh that escapes the little body, it seems to get even smaller, even lighter. With every sigh our son dies, he's a week old.
When I am asked today how many children I have, I always say: two. A living and a dead. I don't have the heart to deny my first son - and yet I often hope that there won't be any inquiries. How old are the children? Then most of them are frightened. People don't like to talk about death, least of all about dead children.
The doctor leaves, we stay behind in astonishment: is that normal?
Statistically speaking, out of 1,000 children born alive in Germany, around 3.3 die. Male infants are more likely to be affected than female ones. In 2015, when our son was born, 2,405 children died before their first year of life, 1,352 within the first seven days of life.
When he was born, at 11:59 p.m. on a June night, there was no scream, nothing, silence. The doctor wraps him in a green cloth and hurries out of the room. We stay behind. Exhausted and puzzled: is that normal?
Is not it. "You have to be strong now," says the senior physician, who enters the delivery room shortly afterwards. And I still think a sentence like that people only say in bad films. Until I understand: He means it. "Your child may die." The doctors at the children's intensive care unit took care, they did everything possible. He speaks of circulatory collapse, cardiac arrest.
That must be a mistake
In my memory we say: Okay. Did we really say okay?
He goes. We are waiting. Alone in the delivery room with the dimmed lights for the first minutes of a new life, for all the cuddling that normally takes place in those first minutes after a birth. Is our child dying next door? That must be a mistake.
The pediatricians reanimate our son for 20 minutes. 20 minutes is an eternity. The senior doctor comes and goes - and takes my husband with him.
In all of the reviews I will read in the months following that June night to answer my most pressing question - why? - one sentence keeps popping up: Birth is the most dangerous moment in life. Because this crazy and wondrous process is relatively inscrutable. What exactly triggers labor, for example? To this day we still don't know for sure.
Disasters were always something that happened to others
At one of my first meetings with my midwife, she took out a model of a female pelvis and used a doll to demonstrate to me the path a baby takes into the world. That looked exhausting, but not life-threatening. I had confidence - in myself, my child and, ultimately, in the modern medicine that would surround me in a hospital. In my world, pregnancy ended with a wrinkled newborn in her arms. Of course, I knew that it could be different.
When I bought a book at the beginning of the pregnancy in order to be informed about all developmental steps of my child, I chose one that also contained a chapter on the subject of miscarriages. I didn't mean to ignore a possible disaster, I just didn't think I was going to experience one. Disasters were always something that happened to others.
I can't remember tears. Not that night in the delivery room. But the feeling of helplessness, still immobile in the blood-smeared nightgown, half sitting, half lying on the birthing bed, I won't forget.
The coordinates of the baby universe
The midwife student who was present at the birth comes and brings me a fruit tea with glucose. She smiles and I think everything will be fine. Somebody drives me to my child in a wheelchair. It's well past midnight by then.
He lies on a treatment table surrounded by doctors, a breathing tube goes into his nose, electrodes are stuck to his head, they measure brain waves, an access leads to the umbilical artery, a clamp is on his foot - it measures the oxygen saturation in his blood. He looks like he's sleeping. His small chest rises and falls, I kiss him on the cheek. Somebody hands us a folded card with a photo of him inside. It is made, printed out, and glued in so quickly that it has the fingerprints of the person who pulled it out of the printer too early. “We wish you the best of luck in life,” the doctors and midwives wrote next to the photo. In addition, the coordinates of the baby universe: 11:59 p.m., 3050 grams, 50 centimeters. It is the only photo of my son that I have only viewed once after he was born. To find that I can't look at it.
There is no right to be lucky
In the birth protocol, around shortly after one o'clock, it is noted: The wife and husband were with the child, appear to be composed. We have heard this many times later: You are so composed. So often, in fact, that I've looked up what that means exactly. Composed, adjective, calm and controlled despite severe emotional stress. I could never do anything with it. Back then I lost all composure, in the truest sense, every hold and every certainty. There is no right to happiness, I understand that. Some things are out of control, including that.
It is said that after ten minutes of absolute oxygen deficiency, permanent damage can be expected in a child. However, it is difficult to determine how serious the damage is in a baby. In contrast to adult accident victims, who at some point wake up from unconsciousness and realize that they can no longer do something, speak, for example. In the infant, only his reflexes provide clues. Does he swallow? Does he breathe independently? “In the end,” says a nurse, “you only see it over time. Some children ride bicycles at some point, others don't. "
Our son doesn't even wake up.
Nobody had noticed anything of the stress my child had that night
The cardiotocogram, or CTG for short, which recorded the heartbeat of my son during the birth strapped around my stomach, showed no abnormalities. I did not have a local anesthetic, an epidural anesthesia. I felt well looked after, at no point did I have reason to believe: something is wrong. Nobody else had that either. Nobody noticed anything of the stress my child had in my stomach that night.
At 11:25 p.m. I get an infusion of oxytocin because my contractions are short and the hormone, also known as a labor trigger and intensifier, is supposed to help.
At 11.55 p.m. it is noted in the birth certificate: Woman is very exhausted.
At 11:59 p.m .: child very depressed. Which in our case means: basically dead.
Two beds are pushed together for us in a room in the maternity ward. We shouldn't have to be too far away from our child. We fall into exhausted sleep. In the end, we stay in the hospital for four nights that nobody bills us.
I have never blamed any midwife or doctor for what happened. But how can it be that I didn't notice anything? For nine months I carried the child under my heart, I registered every hiccup, every kick and every turn. Just when he needs me, I don't notice anything.
"Look forward to your child coming soon"
Guilt is the first feeling I feel early the next morning. With tears I tried to explain to my mother on the phone what had happened and informed my gynecologist. I feel like I've failed. Something that millions of women can easily do - give birth to a healthy child - had completely failed me. Didn't I briefly think about a caesarean section during the hours when the contractions got worse? In all likelihood he would have saved my son. Past. I feel very, very guilty. I don't understand that this is nonsense until much later. What should I have noticed during the birth when I thought myself that I will not survive this! What could I have noticed at all?
The pregnancy had been problem-free, my doctor's only worry about gaining too much weight. Towards the end, she predicts a possible earlier birth - and that's how it turns out. Three weeks before the calculated appointment, the amniotic sac bursts at around 4 a.m. "Look forward to it," the midwife tells me in the delivery room when I nervously call and ask what I should do now. "Your child is coming soon."
He looks adorable in spite of everything
Because labor does not start, the delivery should be initiated. I sign a slip of paper stating that the drug I will swallow for this purpose is not an approved one and I agree to it. A so-called off-label use. It is Cytotec, a drug used to treat stomach ulcers that contains the active substance misoprostol. This is a prostaglandin, a hormonally active compound that, among other things, can trigger labor. The method is considered modern and gentle. It is also used for abortions.
At nine o'clock the next morning we are in the children's intensive care unit by the bed of our son, who is lying small and pale in front of us, a determined expression on his face, his hands clenched into fists, completely wired. A tube leads into his right nostril (for ventilation), a slightly thinner one into the left (the gastric tube). They are fixed with brown plaster strips so that his nose cannot be seen. He looks adorable, in spite of everything.
They cool the boy to contain damage to the brain
We stare at screens and read curves that tell us nothing. We only recognize the name of the drug that drips into his tiny body: morphine. You cool him. For 72 hours while outside, behind the blinds, there is summer heat. So that possible damage to the brain can be contained, they told us. After 72 hours they warm him up again, then it has to show what his little body can do. It sounds horrific: warm up. It's horrific.
A doctor explains to us that our son suffered a severe lack of oxygen during delivery, sometime in the last three quarters of an hour, maybe even for the entire three quarters of an hour. We do not understand. He says: Either your child is extremely severely disabled - or they are dying.
I sit by his bed and promise him life, promise that I will carry him when he can't walk. Explain that it does not matter if he cannot see, because so much of the essential cannot be perceived with the eyes alone; that we will understand each other even without words if he can never speak. I'll go with you to physiotherapy, little man, to occupational therapy, to speech therapy, to therapeutic riding, to dolphin swimming and to music therapy. I think about it until I can't think of any more therapies.
"I can not do it"
I sit by his bed and do obituary notices in my head. What color for the card? Can you open it or just? With or without a photo? And what should it say? I hold his little hand and silently apologize. His chest rises to the rhythm of the ventilator. When I put my index finger in his fist, he'll hold it. Does he notice that I'm there?
"I can't do that," I told the pediatrician tearfully.
Can we do it if he can't walk? I ask my husband.
We going to make that.
What if he can't see?
We can do this.
What if he can't swallow and so can't eat?
What if he can't hear anything?
We can do this.
If we never know if he feels that we are hugging, kissing and caressing him?
We cry. We can do it? Can he do it? Should he make it?
Friends send SMS
We talked about disability during pregnancy. At the latest when the question came up for us: prenatal diagnosis or not? The definition of a “worth living” life was almost easy for us: laughter, friends, joy. During the week while our child is in the intensive care unit, we keep pushing the boundaries further - until we can breathe, we can breathe independently. If he can do that, he can leave the rest to us.
We are allowed to swaddle our son, very carefully. We are even allowed to hold it in our arms, including all the cables, and only after we have promised to hold it for a long time - the effort of lifting it out of bed and draping it on a pillow in one arm is so great. When our son is "warmed up", we put a body on him - as best we can with all the cables - on which a lion is depicted. A friend whom we have informed tells all close acquaintances. Every day they send us text messages and “positive energy”, I start to express milk and hope that it works like a magic potion.
This week we are constantly in the intensive care unit, in those quiet, darkened rooms where time is so important because its passing means that the many premature babies have managed a few days again; in which time, on the other hand, somehow seems to stand still. At least for us. When we step out onto the street in front of the hospital in the evening, I sometimes wonder about the brightness, the speed of the many cars and buses, and generally about the fact that the world has not stood still in shock. I often have the feeling that it is not me who is experiencing it all, but someone else, it seems so unreal to me. In doing so, pain reminds me that I have just had a child. Everything hurts me, run, sit, stand.
He will not make it.
Normality in the intensive care unit
The examination in the morning, a week after the birth, shows that our son will not be able to live. We got up early to be there and sit in front of the closed door of the examination room, in which our child lies in a tube and is x-rayed. We sit there like normal, worried parents and drink watery coffee from brown plastic cups. It's the most normal thing we've been doing for days, and I wish the door wouldn't open anymore because then, one way or another, nothing will be normal anymore.
In silence we run after the two nurses who are pushing our son back into his bed on the ward, around below, through the catacombs of the clinic. Concrete, fluorescent tubes, a man who cleans the floor - and looks curiously into the little bed in which our baby lies, small and delicate. It looks so exhausted. Or are we imagining it because we are?
The doctors in the intensive care unit are waiting for the neurologists to say about the results of the examination. We are waiting for the translation by the senior doctor. An hour, two hours.
We lie around, doze and cry
In the morning I packed a big bag, almost like going to the beach. With a blanket in it, with food and drink. Because the weather is so nice, we spread the blanket on the lawn in the small park on the clinic premises. There we lie around, dozing and crying.
Anything that cannot be discussed in a normal hospital room, for which a room is needed with a door that is locked, cannot be good. We already know.
"For ethical and moral reasons, we can only advise you to turn off the ventilation," says the doctor in a low voice. He says our son's brain stem has been destroyed. Destroyed by the long minutes without oxygen. Irrecoverable. I can not breathe. I can't breathe either, that's just fair, I think.
What does the ethics debate have to do with my life? All at once.
We clarify the procedure. Will die if we say so. In the evening please. He's still getting a visitor. My parents and my younger brother are on the road, two of my sisters-in-law were already there and also a cousin of my husband. I cannot thank them all enough for their courage in welcoming and saying goodbye to my son. So he was not only part of us, but of our family.
"It gets easier with time," says one nurse, "it doesn't get better."
The nurses knuckle the tape off his nose, pulling the nasogastric tube and other tubes, finally the one for ventilation. You lift the child out of bed and put it in my arms, my husband is sitting on my right. They don't turn off the morphine so that he doesn't feel any pain, if he has any.
I'm so sorry.
When he dies, we wash him, we put him on, we hug him.“It gets easier with time,” says the carer who accompanies us and hugs us as we say goodbye. "It doesn't get any better."
We go home and put the baby seat in the corner when not in use. What now?
The sadness covers everything like a heavy blanket. In a kind of diary that I am writing at the time, I note that my shoulders are sore, as if they were weight. I write how bad it is to wake up in the morning because there is only one thought in my head: My child is dead. My grief later manifests itself in many fears: in fear of flying, fear of loss, fear of crowds and small spaces, fear of speed.
Listening to music becomes unbearable
I wake up at night because I think I can feel my son's kicks in my stomach. I can no longer make calls and turn off my cell phone. Listening to music, whatever else I love, becomes unbearable for me. I'm not hungry. I wear the same clothes for days. I make an appointment with a grief counselor and cancel it again.
Everyone who sees us is crying. Some even before they even say hello. I become an expert in comforting. When someone stands in front of me with this gleam in their eyes, I can't shake tears myself. "We like to cry with you," a friend wrote to me. But it does not work. I am not a society winemaker. Either me - or the others. Mostly the others. And then I comfort. “You are so strong,” they say. I am not strong, I just have no alternative.
The funeral will take place on a Thursday
One evening a friend puts a large package in front of the door. When exactly that was, I can no longer say today. In the weeks after my son's death, I lose track of time. The days go by, but it has nothing to do with me. The package includes a quiche, a screw-top jar with small tomatoes, biscuits and lettuce. This time I cry with emotion. And then we eat.
The funeral will take place on a Thursday. It is the only day in July that it rains, so I wrote it down at the time. The sky is gray and overcast and it's so cold that I put on thick black tights. I tie my hair in a braid. I've weaned myself from applying make-up. At that time I wrote down: In my mind I have already drafted a letter to the cosmetics company several times. Dear Sir or Madam, Your black mascara stings in combination with tears in your eyes, the lids of which become red and itchy if the said ink is not wiped off immediately. Under these circumstances, I do not consider the sales price of around 15 euros to be justified.
We're done way too early and stand undecided in the hallway, on the balcony - and then sit down in the kitchen again. Until my husband asks "do we want to?" And I nod. He looks tired, the exertion of the past few weeks has painted deep dark circles under his eyes. Tired and chic, in a black suit, with a tie. “A lot of couples nowadays like to bring flower petals with them,” the undertaker said to us days earlier. "Get some for decoration."
Everything makes me so angry that I want to box everyone I meet. Including the undertaker, who is only doing her job; who dared to sit down at our dining table with a catalog full of children's coffin pictures and ask in a general way: What do you imagine? We didn't want petals and ended up getting some because we think it has to be.
My husband reaches for the kitchen cupboard where our salad bowl is. It's made of glass, big and heavy. Rose petal salad. The florist in the shop around the corner routinely plucks a bouquet of roses for us, and we buy two long-stemmed white ones as well. She is completely affected - and suddenly we are no longer in a hurry at all.
No guests come, we didn't want any
I rummage through my bag for tea lights and the little lantern that I bought yesterday. “Many couples,” the undertaker said, “bring a small candle with them. The best thing to do is to buy a lantern, then the flame won't go out immediately. ”But I only have this little wind light and of course the flame will go out, especially in this weather. We don't have any guests either, we didn't want any.
"Grief makes you tired," says the undertaker and tired is no expression for who I am. I am exhausted and restless at the same time. But above all, aggressive. The day before the funeral, in the middle of Kreuzberg, I almost hit a man who was slowly crossing the street. I was so mad at him that I drove on, very slowly, until he hit the hood with his hands.
A simple model made of light wood
The undertaker is already waiting for us, she is standing on the stairs of the cemetery chapel. Our corpse comes through the other entrance. You book the chapel automatically, 15 minutes of prayer, 50 euros, that's included in the package. We are unsure: do we have to stand for 15 minutes now? We put the salad bowl on one of the chairs and then we actually stand there for 15 minutes, staring at the small coffin (we have opted for a simple model made of light wood) and the flickering lantern in front of it and are almost surprised when the cemetery grave suddenly appears stands in the side entrance, black peaked cap over white beard, and gives us to understand without words: That's it.
My husband carries the coffin all the way up the long, narrow path to the grave, step by step. I walk behind him, the bloody petals in front of the still visible baby bump, in the salad bowl that is so inadequate for the occasion. Like me. I am not appropriate either. None of this is appropriate. That's not how life works.
Sometimes there is no answer
For nights at a time this summer I googled whether the medication to induce labor, whether the contraceptive drip, whether both could possibly have been the problem. I read of cases of overstimulation of the uterus, storms of labor, and a lot of things I didn't understand. Meanwhile, on the shelf was the folder with the birth certificate and pages of notes from the CTG, from which I tried again and again to find out where there could have been a mistake. Almost three weeks after the birth, we have an appointment at the hospital - to talk to the doctors about everything again. None of the three present can tell us what happened. I am beginning to understand that when asked why? sometimes can't give an answer.
Then we're kidding
I can no longer sleep, from 1 a.m. I lie awake every night. I'll make another appointment with another grief counselor - and this time I won't cancel it.
We count our dead: three grandmothers, four grandfathers, aunt, great aunt, a good friend, my friend's little daughter, the little son of friends, another friend, a former classmate, an uncle, another aunt. Then we make jokes about what everyone could experience together, with our son.
We decide not to dismantle the changing table in the corner of the room, but to leave it there.
Half a year after he was born, in December, I was visiting my son in the cemetery when a woman spoke to me from behind. She says that she has eight children. Your eldest has become the father of a son who is buried back there. She shows me a photo of the baby. I'll show her one too and hope that she'll leave me alone then. But she remains and is silent for a moment and does not go.
“What are you doing with your child's name?” She asks me, and I don't understand what she means.
"Are you going to use it again?"
“Yes,” she says. "Can you do that?"
And I still don't understand until she explains: The grandson was named after her husband, his grandfather, a family tradition. Now the grandson is dead.
His brother is born nine months later
I suddenly have to laugh. What a pragmatism, what an earthly problem. No, I tell her, my son bears his name because it was meant for him. But of course, why shouldn't it be possible to give the name to the next child again. She says goodbye and I stay at the grave smiling.
For the first time since his death, I would like to have a child again. I no longer believe that it is betrayal of him. On the narrow path down to the exit of the cemetery, I think of names for his siblings.
His brother is born nine months later. When we go to the cemetery together today, he sometimes brings him a toy car - which he will exchange for another on the next visit. He knows he has a brother.
Why did this happen to us, why did it have to happen in the first place? I don't ask the questions anymore. There is only one thing that still concerns me: what did he look like with his eyes open? My husband knows. He was with him when his heart was beating again, twenty minutes after the birth, when he arrived briefly, only to say goodbye immediately. He patiently always gives me the same answer: tired.
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