“At first I thought it was better for her to die, then I wanted her to live as long as possible”. Excerpt from the book “The Short Life” by Dr. Dariusz Kuć

“Short Life” is a conversation between Dr. Dariusz Kucia and the parents and carers of terminally ill children. These are the stories of people in whose place no one would like to be. One of the main characters is the grandmother of Victoria, a girl who lived for four years. Nobody knew what she was really sick with. “When my daughter was pregnant and I found out that this child would be seriously ill, the only thought was that it was better for this child to die”

1. It was already known that the granddaughter would be born ill when she was pregnant. Doctors asked whether to save the child at any cost in case of complications. “The doctor then said that if they save a child who still has no great chance of surviving, they could damage the uterus, and that my daughter may never have another child.”
2. «When I remind Victoria as she is in these photos, smiling, joyful, cheerful, I forget about those terrible moments when she was so tired»
3. You can find more up-to-date information on the TvoiLokony home page

Nobody knew what was wrong with “this” child

Excerpt from the book “The Short Life” by Dr. Dariusz Kuć

VICTORIA

You took care of your granddaughter, from birth – for 4 years. What in fact Wiktoria was sick with, it is not known so far.

The fact that she would be sick was clear even before she was born. When my daughter was pregnant with Wiktoria, it was already said that something was wrong. But everything turned out only later, when Wiktorka was born. Then it was certain that it was damaged. But the recognition of such a specific one was not really the end.

We knew that it was not developing properly, that there were very long delays, that there were no properly developed structures in the brain, but we did not know what the disease was.

There was a suspicion of the Dandy-Walker syndrome. Then this was ruled out by genetic testing, there were other suspicions, but no one ever said what it actually was. I don’t even know why the doctor who started doing this stopped the diagnostics. He himself said he would take her blood to America for research. And I told him that Victoria’s condition was deteriorating and that the blood should be frozen for tests. He was supposed to talk to me anyway, but then somehow he stopped talking. I called him several times, couldn’t get in touch with him. And I gave it up. Then I just texted him that Wiktoria was gone.

Let’s go back to the beginning as soon as you heard that your granddaughter would be sick.

First moment: I found out that Wikta … not Victoria, but that the “child” would be sick. Because Wiktoria means my Wiktoria for me, these are different emotions. On the other hand, when my daughter was pregnant and I found out that this child would be seriously ill, the only thought was that it was better for this child to die.

The Lady loved her so much afterwards, looked after her so wonderfully, but nevertheless, she thought to herself this way.

It was unimaginable to me. I just did not know such a heavy damage. I was thinking in such terms that it could be Down’s syndrome or that type of disease. But I couldn’t imagine the state of Victoria at all. But it was just that I thought; that if the child was to be so sick, it was better for him to die.

Well, it did not die, it only developed in the belly of your mother, your daughter.

The next step – we did an ultrasound. The doctor then suspected there would be a Dandy-Walker syndrome, but only said the baby would be “different”. I thought “what does a different child mean?”, But after all, not everyone has to be the same. Others are different.

The next stage – your daughter went to Warsaw for further tests.

It was already known that the child – I continue to say the child – weighed a little over a kilogram, a little one. Then the professor stated and literally said that my daughter would give birth to a “monster”. Do you understand? «Monster».

Terrible.

Then the question was asked what they should do, when the child starts to die in it, whether they should save the child or not. It was important because saving the baby at all costs involved cutting the uterus. The doctor then said that if they save a child who has little chance of survival anyway, they could damage the uterus, and that my daughter may never have another child.

Did you have to make decisions right away?

Yes. To me it was obvious all the time that the baby better die. Actually, I felt so light that even if she is born alive, she will die after the birth. It may be cruel what I said at the moment, but the Lord wants me to be honest. So I’m. My daughter and I discussed the death of the child, including where she will be buried and what we will wear. And we talked like that, we settled everything.

Without emotions?

There were emotions, but not like with Victoria, this Victoria, who then lived 4 years. It was then a “child”, an unknown “child”, a “child”.

Zobacz: The news of a dead fetus or its severe defect cuts joy from despair, hope from fear

“I thought: he is alive, he is alive”

So this baby survived the pregnancy and the birth.

It was the first time I saw her in an incubator. I saw: alive. I thought: “he is alive, he is alive”. My imagination just did not grasp it, I did not understand at all what kind of condition it could be. It was the first time that I met the Lord and it was the Lord who told me that Victoria was badly damaged and that she would not live for two years, that I could be sure of that. And I remember that then, speaking coolly with the Lord, I said that I did not want to use persistent therapy with her. I knew what it means to be persistent in treatment. I had a mother that I looked after until the end. And I did not use persistent therapy with her. Mom just walked away. I now know that if she had been sucked out, maybe she would have lived longer. Then I mentioned this Lord. And in this sincere conversation, we asked this question together; would live longer, but for what? She would suffer longer. And then I coldly knew that I did not want persistent therapy. But it was cool at the beginning, because then everything changed.

So before she was born, you decided it was better if she died. After you were born, you knew that you would not use persistent treatment. And then that thinking changed. But why?

When I was talking about this “child”, I didn’t know her at all, I wasn’t connected with her. Later, when it was “my Victoria”, when I fell in love with her, I started to think otherwise. I didn’t want her to die, I didn’t accept it, I even fought for every day and every moment. In the beginning, there was such a cold thinking, there was only reason. Then there was the heart. But it kept coming back and again the question, would it not be better for Victoria for her to die?

And what is the answer?

There is no answer to this question. Rarely, the really important questions have good answers. She was just born and we had to accept it. We want to decide everything too often, as if everything could be under control. Back to the question; if she had died, she would have simply died and for sure then I would have thought that it was good that she had gone, because she would not suffer, because she would have been spared all this suffering. But she was born and lived. Brave fighter, as we named her. So if this child was bravely fighting for his life, why should I not help him. She fought, she could have died before, during or after giving birth, and yet she survived. She was intubated a few times, resuscitated at home – she survived. So many times she had had the opportunity to leave and yet she did not leave.

You thought you’d better leave. But is it better for her or for you?

Of course for her. She wouldn’t get tired. Same with persistent therapy; it’s about deciding which is better for the baby, not for me. I often think about who is persistent therapy really for? Is it for us or for the sick? Who do I think more about then? About the child, about the patient or about myself? You are smiling, but you are.

I smile because first of all; Your thinking has changed and someone who will read this may not understand if you thought it was better for her to die or better for her to live.

Well, there should be no doubts. At first I thought it was better for her to die, then I wanted her to live as long as possible, and then, in the end, I decided that I had to say goodbye and let her go.

Secondly; I am smiling because I wanted to ask you the questions you asked. Who do we think about when deciding to use persistent therapy?

About yourself. Selfishness, do you understand? Out of selfishness, we do not want, but fear to part with our loved ones, and that is why we fight for persistent therapy. We then think about ourselves. And in fact, when a man loves someone, he should not think about himself only about him, about this sick person, if he still has any life and if he suffers too much. Are we not just making him suffer? I had to answer these questions. And it was probably the most difficult, not probably but for sure, the most difficult decision in my life. Because when the Lord came to me with this question, what were we doing, I was the first to tell you that we are already finishing. Before the Lord told me it did not make sense, I was the first to tell you this.

«I would like to be sure. that I did the right thing every time »

There is such certainty in your voice.

But probably only in the voice. I would like to be sure that I did the right thing every time. But there will never be such certainty. When I remind Victoria as she is in these photos, smiling, joyful, cheerful, I forget about those terrible moments when she was so tired. I’ve denied those last weeks, those nightmarish two weeks of my life, when she was so swollen, when she was breathing so hard. And that’s my fatigue. After all, that last night I did not feed her, I did not give her to eat, I just couldn’t cope. I was already at the end of my tether. And then it was the only possible, right decision. There could be no other then. But in retrospect, I forget about those painful moments and I only remember what is joyful, what I want to remember. I miss her a lot. I just miss you terribly. Springtime, the sun is starting to shine, and I’m thinking; God, walk to the forest, I’d like to go with Victoria. She loved the forest, you could see it when you entered the forest. She felt it. With different senses than us, but she felt it. She may have seen poorly, but she has seen something. Maybe she heard little, but she did hear something. Or maybe she had a strongly developed sense of smell, maybe she could smell this world? We don’t know that. I miss, but I miss the kind of Victoria from the photo, not the one who had epileptic seizures, who suffered, who suffered, who got air pockets, which was livid, which I saved 3 times. But if I remember everything, the whole thing, and the good and bad times, the decisions I made were good. These were decisions made out of love for Victoria.

I would like to get down to business, what were the decisions?

First, that we are not going to the hospital anymore. Never. It is known that a hospital is not a good place for a child. I made this decision after my last stay in the hospital, in the emergency room. I will never forget it. Eight doctors are standing over her, the lamps are shining, they are trying to puncture themselves, they stick to something, she screams into the heavens, and they want to operate on her. «What is she screaming like? It screams, these are cerebral screams, it is necessary to operate ». And then I realized that it was enough. Later, at home, when I had to save Wiktoria, an ambulance came to my mind. But I immediately remembered that room in the hospital, those lights, those people and that Victoria’s scream. And then I thought: if she is going to go, let it go in my arms. And then I remembered what the Lord told me when I was afraid to go to the forest with her, because she might die. That you would rather die in such an environment than in a hospital. And I stuck to it. I also knew that I would be better at home alone than in the hospital. If it was still a child, let’s say 7-year-old, one who understands, you could say: listen, honey, you have to stay here, the doctors will help you, it will be better and I will be waiting in the corridor. But it was a handicapped child who did not understand, who knew his walls, the smell of his room. And this child is taken to some alien world and does not know what is happening. And how does she save herself? Screaming because that’s all he can do. It doesn’t have to be a hospital, sometimes just move her from one room to another that she doesn’t know and she’ll be terrified.

If you called an ambulance, they would take Victoria to intensive care. She would probably die there. Maybe not.

It just so happens that I work in a hospital laboratory. And I was often at children’s resuscitation, I saw these children lying alone in such difficult times. Themselves! It would be like that in a hospital. The house was different. I lay down next to her, she felt warm, I was with her, I talked to her, I talked all the time, she was with me all the time. With me and the babysitter who helped me every day. Great girl. We stayed awake for two weeks, I don’t know how we survived it. So Wiktoria was with us all the time. I myself would like to go away with someone close to me. And not like it is in the hospital: “will you look there, do you breathe or not?” So I think that the resignation from this persistent therapy was a good decision, that if you love this loved onethen at some point there is no other way out.

So what did you give up?

From the hospital and intensive care, I already told you that. And in the last days from injections. It was the last stage, 10 days before Victoria died. Earlier, when Wiktoria received injections, she did not cry. You could give her while she was sleeping, she did not wake up, she did not react at all. Suddenly, with the next injection, she tensed up, pulled back this buttock, you can see that she was suffering. Then it was really visible. And her pain hurt so much that I hugged her tightly and said: Victoria, I won’t let you suffer anymore. Not anymore. You will not suffer anymore, you will go to heaven, there is Grandma Nina waiting for you, you will not suffer anymore. It was the moment I knew we had to stop. As a healthcare professional, I come into contact with matters, people, and conditions that people do not know. They don’t know that a man can lie like a log: a drip here, a drip over there, a machine here, in all the holes in the tube that can only be inserted, and you lie there. And I know it’s not a good life. So I didn’t have much doubts, I just made a decision not to apply persistent therapy and I told you that if I had lost something, some unexpected emotions, please stop me from doing this.

At one point you decided that it was enough.

I didn’t think long, but I saw that she was suffering so much. Then I decided that it had to be finished. I cannot let her suffer any longer.

So this was the moment when the suffering was too great.

Tak.

Until then, it was possible to bend over, accept it, but not from then on. So understand it?

Until then, I was fighting for her all the time. I was arguing with you, you didn’t even want to give injections, because it doesn’t make sense. It was different, hard. It wasn’t like the injection hurt her, and I got scared right away and decided it was over. It all added up, she was getting weaker, breathlessness, saturation was falling. But that injection was the drop that shed the chalice. It was the moment when I saw that I had had enough. And then I immediately hugged her tightly to me and said, “Wiktorka, if you can fight, then fight, I will be with you all the time, but if you can’t make it, leave.”

You let her go.

It was the Lord who once told me that you should let your child go.

Previously, there was no such permission.

Not. Wiktorka left several times, it was really hard. I am convinced that when Victoria died for the first time on Holy Saturday, you remember, I did not let her go. I am absolutely sure of it. She turned blue then, gasped for air, and I cried so terribly and felt such pain, it was unimaginable pain, it was a pain greater than when she really passed away. And at some point, when she was lying with such low saturation, she opened her eyes, not much, but as much as she could manage. And her gaze was as conscious as the Lord is now, as the Lord is looking at me. Completely conscious sight, so different than before. And then her tears leaked out. And this tear has already completely blown me away. I started to cry and this terrible pain was heard in my crying. And then she stayed, did not go away. The next day, for Easter breakfast, she ate sausage with us. She was eating, that is, licking the sausage. It was a miracle after all. The second time she was leaving, the nurse from the hospice said: “say goodbye to her”. And there was such pain in me, I hugged her so, golden God. And this last, third time. Then I said that if you can’t do it anymore, go, it was allowing. And she left quietly. I sat with her and didn’t even see when. There was no pain, there was no crying, there was nothing. There was no despair at the time of leaving, for that moment of leaving was not in sight. After all, the Lord left us then, and after 15 minutes I called that she was dead.

But you were aware that she was dying.

It’s like that. But at the same time, I was a grandmother who loved this child terribly, and I didn’t want to know it. There was a moment when I did the tests and it turned out that he had very low albumin. Then I called my friend, a doctor, and gave her the results. There was a silence, and that silence had already told me everything. I asked “is the end coming?” And she says to me: “this is the beginning of the end, we can give her these albumin, but it’s like a sieve, we will give and it will come out of her, you will extend her life for a week”. So first with that silence, that silence on the phone, and then she just said it was over. Because if she hadn’t told me so directly, maybe I would have fought even further with you for administering these albumin. After all, the Lord did not want this. Or I would like to see something else done for her, some research. That’s when I stopped fooling myself.

So we come to the point where the therapy related to excessive suffering has no effect.

Yes, it definitely is persistent therapy. We extend the life that is only suffering. And what we do will do nothing.

When to consider that life may end?

Only when you recognize that life can end. I say: “end”, I am not talking about the situation when we want to end this life, which is euthanasia. These are two other things. When can you let go? Do we have a moral right to decide this?

There is no need to decide whether to allow or not to allow death. Because it’s not up to us. One has only to ask whether it is moral to administer drugs, to use any instruments, is it moral to take extraordinary therapies, to keep this sick person alive at all costs, the suffering sick person, just because we cannot part with him?

So we come back to the fact that we then think not only about ourselves, not about what is good for the patient, but about what is good for me?

Exactly. I tried to think this way as I looked after my dying mother before, and then my Victoria.

Well, you already had previous experience with taking care of your granddaughter.

But the departure of a child and the departure of an adult is quite another. I buried both my parents. But it doesn’t compare at all. And I was not hiding my own child, I was hiding my granddaughter.

What was most important in all of this, in these decisions not to apply persistent therapy. Is it that I will not use persistent therapy because it would be too much suffering for her? Was it more important that the treatment had no effect? Or that I will not use persistent therapy because the patient is so seriously ill that he has little chance of surviving.

All together. But in the first place, not to allow unnecessary suffering any longer. I wanted to spare her this suffering.

So everything you did for her was to make her suffer less?

Not. I will say it differently: that she would get the most out of the life she had. And to show us what is important in life. Because we have no idea about some things. The Lord sits, walks and does not see the world from the perspective of a lying person. Please lie down and stay this way. Just like she was. When I was with Victoria, I saw her great joy when we put her in a pram and she was brought into the room like a queen and it was such a wow! as if a cry of surprise and satisfaction. Because then she saw the world from a different perspective, she saw the kitchen, she saw the cabinets, but this time not from below, she saw water pouring in the tap. She sat next to me in this trolley and I was washing up, what a joy it was. You are not able to provide such joy to a healthy child. The water was pouring and splashing, I was still tapping pots, and for an hour the kid was laughing. Another thing: I turned off the light in the kitchen and put it on the window; in front of the block, the lights are on. And again this pleasant exclamation of satisfaction and surprise. She then saw things that she had never seen before or seen from a different perspective. With Victoria, I looked at the world from her position.

Are you speaking metaphorically or realistically?

Both way right. I bent down to the pram, lifted my head and watched what she saw lying in the pram. A completely different world, try it. Please see the world from the perspective of a lying child. We are not aware of it. And Wiktoria taught me all this. We’re going and she laughs. Why? Because we’re riding under black cables against a blue sky, it can be a funny sight. But you have to get down to her level and see from her perspective. And then you will see black wires against the sky and the effect can be very nice. So you have to do everything so that the child sees it and that we, thanks to this child, look at this world differently. Because we don’t think about such things when we are healthy and have healthy children. This is a different world. I have passed from one world to another world. It’s a much richer world, heavier but richer. She showed me a different world and I showed her another. She was learning about my world, I was learning about her world. But how much we got to know these worlds, I can only assume. Because neither I know how much of her world I have known, nor do I know how much she has known of my world.

She met the Lady first of all. The world, too, as much as she could. The main thing is that she experienced love.

My only regret is that I did not have time to give her more, because if I had more time, she would have got more. Now I feel guilty that I didn’t learn to drive a car earlier, because how much more would I show her? I didn’t show her the colorful fountains in the park, somehow I couldn’t go. I didn’t go to the sea with her, but I should have. But what’s most important she got it; love, caring, caring.

The lady talks about her, and about herself?

For me, her joyful eyes were the reward. Please see this photo. Do you see her joyful eyes? Is this an unhappy child?

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