Perinatal bereavement: Claire's testimony

Claire recounts, in testimony, the tragedy she experienced. While she is pregnant and close to term, a uterine rupture occurs. Her baby then suffered from a fatal lack of oxygen and little Castille was born to die a few days later. A terrible ordeal that this "mommy" recounts in a moving way. How she had to say goodbye to her little girl, how she had to continue to live and overcome this tragedy. Today she testifies for all the Mamanges who suffer in silence.

Claire is married, she is the mother of 3 children, 3 girls, one of whom she says is in heaven. This is Castile. She was born 4 years ago and she didn't stay on earth very long.

Claire, would you like to tell us your story?

So I was a working woman, she was my 3rd daughter, so I worked, I had a job... very demanding, I was, I am in advertising pregnant with my 3rd child. A fairly fragile pregnancy, that is to say already at the start, a fragile pregnancy. I was very tired. Lots and lots of responsibility, lots of work. And so I'm going on maternity leave, and there on the day of my husband's 40th birthday. I don't know, 15 days later... I have stomach pains that I already had before. I had warned my doctor, my gynecologist, of the pain. I was told, it was ligament pain, so I was not worried more than that. My sister had still called - my sister - a midwife because she thought it was weird.

So suddenly, the midwife had come. We had done an ultrasound, is already there, we had seen that I had a placenta accreta. So that I risked having a haemorrhage during the delivery which was planned by cesarean section, 3rd cesarean section and that I was already at risk of losing the uterus. Afterwards, I said to myself: "It doesn't matter, 3 children is already huge". Anyway, it's mainly the obstetrician who will be bothered if I have a hemorrhage on the day of delivery, and at least he will be warned. I wasn't more worried than that. And that day, March 16, I had a very, very stomach ache.

I was with my mother. Pain more and more strong and we are always afraid when we have pain somewhere, to disturb the firefighters or the samu for nothing. Finally me, that's it. I am one of those people and there in fact my mother said to me: "But do you want me to call the fire brigade? And there in fact what pulled the rug out from under my feet was my pain, that is to say I couldn't even speak anymore so in fact I said here I was a little dry. So the firefighters arrived. It was a pain so ligamentous, so in the lower abdomen on each side. And which was really very lively so the firefighters arrive. I go in the fire truck, so there I still have a lot of pain. They don't know what I have and they keep asking me for my social security number, I want to say.

My husband puts his hand on my belly: "I think there is blood inside"

After I think it was a bit overwhelmed but hey I was in more and more pain. My husband arrives, he puts his hand on my belly and there he tells me. "Ah, I, I think there's blood inside", so I was a little woozy. He phones my doctor who says, "Ah, it must be a ruptured uterus, She must be bleeding internally." Suddenly, the SAMU arrives. I had like a hard ball of fire in my stomach and there, uh. I wanted someone to help me and no one listened to me. It was during the samu, it lasted 2 hours so okay so I was even thinking more about Castille, I was just thinking about this pain that I wanted to be removed, it was quite complicated and that's what's weird, it's what we always say to ourselves, when we suffer a lot, we pass out. And there, I did not pass out, I did not faint, there was a force, something which prevented me from leaving, it was very strange until the moment when in the fire truck, I a little clinging to the doctor saying to him, but help me in a little... stiff way. And he said to me: "She's going to let go of my blouse!". And actually there, I actually, I fainted, I found out afterwards, but I think I gave up so I got to the hospital and they did an ultrasound right away. And there I hear, there's blood everywhere, there's blood everywhere and oddly my stomach hurt quite a bit when I was touched. For the ultrasound, the anesthesiologist, I think, arrives with a mask on my face to put me to sleep and there I take it off extremely brutally because I was suffocating. And suddenly, when you choke, you want to straighten up. And there, the Samu doctor, so kept my head lying down so I didn't understand me since I say he knows it I'm suffocating so I tried to get up to breathe but he was holding me and in fact he was keeping my blood flowing because I think I was losing so much blood that I had more blood in my head so there you go and after he came back with his mask on with a gesture it hit me extremely soft.

So after I arrived, I was at 2 mg of hemoglobin. Uh, so I wake up. In the recovery room. And there they tell me, your daughter was born, they removed your uterus, they transfused you as much as possible and you almost died because apparently my husband had been told that he had a 3% chance of finding me. alive. So after I said to myself, Well, it was a bit sporty, my daughter was born, everything is fine. Alright, this is going to be a bit long, but it's okay. Then I go from the intensive care recovery room after a few days, so I still hadn't seen my daughter, but I didn't miss it too much because I like all mothers I think, I thought to myself when would it be next? same sport, it is better that I take strength there now that I sleep, that I regain strength. And after that, I'll be able to take care of my daughter.

So, in fact, she was born on Wednesday and Saturday afternoon. I could see her. So I was in a wheelchair, with oxygen, drains, so there you go, I was really diminished, let's say and I arrive in her little room and there I see her but so cute. There, I was so proud. I admit, I was extremely proud, I found her plump, plump. I found her really beautiful, so cute.

I had only one desire, it was to take her in my arms

So there you have it, I find it wonderful. I just wanted to take her in my arms. Obviously, that was not possible. And there, I begin to understand that it is not obvious and I may not have done medicine. So I look, she was plugged in and so on, but she was moving, she had little eyes open, she was moving, she was a real baby. She was a living baby with her little feet, her little hands, she opened... The only 2 things that alerted me a bit were her little tongue like that, outside of her mouth. So there I said to myself, Well, maybe it's just a small defect, it's not very serious and it's especially on one of the graphs, I don't really know what it's called, it was like a line. A line... And then I said to myself, That's not a very good sign, all the same I think, but I don't want to believe it, I don't want to look, I said to myself, Well, maybe it's normal. The head of the neonatal floor arrives, the pediatrician.

And I ask him a bit of a boat sentence, so everything is fine and he said to me, Oh no, everything is not fine? - "No! Risk of death or serious disability". So there, of course I'm crying, I tell him, Ah yes anyway. Well, I wasn't expecting that at all. Finally it is a bit of a blow. So here and there I am told that I suddenly had an internal hemorrhage. So like the baby inside the belly and oxygenated by the blood, the fact of having lost a lot of it, she lacked a lot of oxygen so suddenly you have to do an MRI to check if everything is fine and the very evening of her birth she had convulsions. Uh it's a bit of a blow and I didn't want to believe it. I said to myself that that no, I'm sure that she will heal in fact. It's, it's a moment, a bad moment to pass. The doctors are always there to add to it. They are very pessimistic. I'm sure Look at the evidence. Me I'm here. No no no no, no no, and so I started to see her like that in her little incubator, then in my arms, in a bassinet, finally, in a pillow, and then I said to myself, But when is it? can i see her? I was obsessed, I had to have her on me in my arms and everyone: No, it's not possible, it's not possible, she's too fragile, we're waiting. So that's Castille's story, but at the same time, there's my own story, which is to say that when you're a mom and you give birth, it's never easy. Except for certain people and there, without going into details, we still have his body which is bruised. We will say really bruised on all sides.

Two battles to fight because we have a bruised body

Well it's 2 different battles to fight, it's very, it's very strange but hey you have to fight them so here we go and there's one thing that made me suffer a lot, it's the drains. I had 2. And I admit that when the nurse came and said, we are going to remove them. I didn't really know what was waiting for me and there I admit, I will remember it all my life. It's been terrible, so that's actually the difference between your child who is bad, who is fragile, his life being at stake. And yours, so your life is not in danger. You still have a shock to have experienced something complicated. The more your body, which is bruised in fact, we're a little lost, we don't know too much... not too much what it's called. So on Monday comes the MRI. And I don't know, I was expecting it, I say, I absolutely had to have the MRI, the MRI, the MRI, I was just thinking about that and I said to myself in fact I was waiting for the MRI as if it was was something... They're going to tell me everything's fine, it's fine, et cetera. We are going to leave very quickly very very very very quickly we are not going to stay there for hours, we have the result so on Tuesday the result of the MRI. So Timothée comes back, we go to the neonatal unit and there we see the head, the face of the expressions of the whole team which was very dark, very closed. Timothée says to me, it's a very bad sign and until then you're telling yourself no, not us, not my daughter, it's not possible. And there they tell us: - Uh so Castille has lacked oxygen in his brain. And the core of the brain is burned. She has 10% of her brain working. In small spots, ie 1%, 2%, 4% and so on.

The doctors tell us: "it must be detubed"

So it really is a disaster. A disaster. They told me, she won't be able to breathe on her own, not eat on her own, she doesn't breastfeed, she won't be able to walk. She won't actually be able to live. Basically, I don't even know what I felt that day, yes, I think I was knocked out. Yes, stunned, appalling. I believe that in my room I simply yelled "I don't want my baby to be taken away from me". And we are told, we are going to detubate it and you have to choose the day. I don't choose the day. Finally I want to say: already, I am told that my daughter is going to die and that she cannot live, that she is handicapped with a very very heavy motor, and in addition I have to choose the day. untube her.

Anyway, I didn't really know anymore, I didn't understand and since we're Catholic, I didn't want something to happen that was beyond me. So suddenly I asked to meet the hospital chaplain because each religion has its chaplain in the hospital to respect its traditions, its cultures. So that, I find that really good and he reassured me. He told me, no, no, it's therapeutic relentlessness. So he told me no, no, be reassured on that side. It is, on the side of your religion, it is therapeutic relentlessness, that is to say that if there had been 1%, even a little less hope that she would live even handicapped, we wouldn't have detubed, but there was no hope. So, suddenly, we had him baptized. So the next day at the hospital, and that, against all odds, was a moment, not of joy, but it was a moment of life. That is to say that I was happy because my family, so normally I could see no one and Castille either. And there, my parents. The godmother of Castille, my sisters, were able to come. And it was really for me a kind of breathing. It was to bring life back where there was death and I admit that that touched me enormously and that my loved ones could see it, touch it, caress it and know it in fact quite simply, it is to say create memories with it. It was very very important for me and I must admit that I was very happy afterwards, well, it was not a wonderful moment. But hey, it's part of the nice memories, frankly so here it is.

Announce to my daughters that their little sister is very bad

Afterwards it was necessary and there... To continue in the tests, we will say, to announce it to my daughters who, they, were able to meet their sister. So once I had predicted to them... I had told them: "Your little sister is very small, she was born a little too early, she is very, very fragile, she is extremely fragile"..., but afterwards I think that I had the same reaction from my daughters saying yes, yes yes well, she is weakened, "between you and me, everything will be fine". And there, then, they saw her. They were able, thanks to extraordinary nurses, really kind, extraordinarily patient, to take her in their arms. So that was marvellous, with all the necessary medical protocol, that is to say the little tubes, the morphine... and then the four of us were in a room alone, so my husband, my two girls and me. And then we told them.

And there, for a mother, it's finally for a father too, but here I'm speaking as me mum. It's appalling. It's violent, but not because there, not only will your daughter die, but in addition, you must, somewhere, kill your children. Well I mean, it's a pain but terrible and you administer it, but terrible. In addition, they each obviously had a different reaction. I don't think I'm a professional to have the words, to answer all their questions, to calm their pain. It was violent, it's a series of pains, so they understood.

Afterwards, we went back to see Castile. Always followed by the psychologist because it is mandatory and so much the better because there are times when we are a little helpless. They were therefore able to kiss their sister. We didn't have to say goodbye to his sister or anything. I think they just kissed him, stroked him, looked at him. And they came home.

We asked, "Is she in pain?"

We asked if Castille was suffering, we were told yes. And suddenly my husband said: “in fact, we detube her as quickly as possible, we are not going to keep her for ourselves selfishly while she is suffering”. And suddenly they said "Very well the next day on Thursday". OK, so suddenly the next morning we came to see her, we were told "go have lunch, we'll do that in the afternoon" OK very well, so we obeyed, we went to lunch.

In fact, what is difficult is that when you detube your baby, you don't know how long it will take for him to die. And these are things that we don't think about, that is to say we are not ready, we are not explained... Afterwards you will tell me that does not concern ordinary mortals and fortunately but I admit Well. Uh I hadn't thought of that. We untube it.. There, I left my husband because there for once. If I couldn't, it was too complicated. He wanted to take her in his arms to accompany him so I said nothing. I said to myself: well, I wore it for 9 months. Finally 8 months, so I can leave that to him. She had a first cardiac arrest and then my heart jumped saying "Ah no no no she's not already dead no no no and no." In fact, she came back to life and then they put it on me. And it was the second time I had her in my arms, really with me and there I was complete. It's never happened to me at this point to be complete. Really.

I was in osmosis with my daughter and until then, with my husband, we said to each other: there, she's sleeping, I even told the nurse, I said to myself, but even if it means going for someone crazy. Don't worry, I think she's sleeping there, no one knows, but she's going to wake up. Everything will be fine and she says to me: "no, no, she's in a coma.- A way of speaking, don't worry, I... no. It was until the last second, so after there It was quite difficult. Because she had several cardiac arrests. I was asked if I thought she was in pain. "I don't know. Well, I mean, and it's tricky to be asked that as a mom. Well I hope not in fact, I hope that we give everything that your child needs. So there you go, she had 7 cardiac arrests, I think it was. This is inhuman. Frankly. And then she left, that's it. And I didn't want to. I wanted to make sure she was 100% dead, so that might sound a little strange.

In fact, even in the hospital, I said to myself, Ah, I can tell them all the same that it's my, it's my anxiety to be very sure sure sure sure I don't abandon it until at the last second. And I said, I want us to do an ultrasound of her little brain or her little head just to be sure. So at first, they found it strange. I said, "Listen, you respect everyone's customs, me, it's not a custom, it's just... I don't know. A mom's wish. There you go. And they were super nice because they did, they came and told me it was over.

I would have liked to still keep her with me

At that time, it's not hard at all, it's super weird. I was not relieved, which is unlikely, is that I had her in my arms. In fact, we took out all his little pipes. And I could finally play with my doll without the morbid or excruciating side that people might imagine, but... I had my little baby in my arms very small, I could cuddle her, take her, lift her a little as if she was finally asleep, yes. So I admit no no, it's a moment when I I think I didn't realize, I was. And completely. Yes, I was, I think, stunned. And in fact, the nurse and my husband tell me, well, maybe we'll leave her? No, actually, I didn't want to. For one, I've been waiting to have her in my arms for a week. There I had her in my arms I kissed her. I could finally play with my baby. I wanted this little moment with her and I admit that... "We're going to wash her" so.

We always have regrets, we can't... but there I would have liked to say to them: "no". "In fact, we're in no hurry, it doesn't cost anyone. Finally, no one is in a hurry. I would have liked to keep her with me. delicate. She was a mother, a nurse who was a disabled mother. really very very nice. I think her name was Marie Hélène, really very delicate and so she did the little Castile toilet. , then she went to the morgue and I only asked for one thing, that she didn't have a sheet over her face. That's just because me, I, I, I wouldn't have liked to actually, I don't like the idea of ​​it being taboo at all, whether it's sad or whether it's... something not pretty.

Is this a taboo subject for you?

She's a little girl, she was a baby, she was pretty, she was no no, it's not taboo at all, I don't like the idea of ​​it being taboo at all. In fact, just because we talk about it doesn't mean it's going to happen to others, it has nothing to do with it, so no, I think it's very important to talk about it. Precisely, it was a journey there it's been 4 years, it was not the same at the very beginning as it is now, that is to say that it has evolved, I think it will evolve again and I think that every mother talks about it and saw it differently. Every family, I know that there are a lot of well-meaning people or not, I don't know who said to me: "You mustn't talk about it too much already. It's disturbing. Then your children mustn't live with that. This kind of leaden screed, of guilt, but nobody talks about a leaden screed, that is to say that it existed. There was an accident, it's a storm in a fair weather sky of a summer sky. It's unpredictable and it's catastrophic.

A uterine rupture is like that no, I like the idea that we talk about it, that it is part of the family, but afterwards I didn't want my children... Whether it was heavy, that is to say there is no cover at the table or things like that, that is to say that she is among us. She will be in a butterfly, in a star, in a sign, in the wind, but it's not heavy. I didn't want it to be heavy. At the very beginning, it's complicated. The first month I remember, I wasn't arriving when you think of someone, you arrive with visualizing her and me Castile.

I was like dead inside

I had the chance to know her there are moms who have not had the chance to know their baby or to see them or not had the desire. And me, I had the chance to see her, to know her, to live with her, to feel her and during the first month after her death, I was lost because I couldn't visualize her. I was like dead inside, I was lost, I had and as I went. I got it, I looked at his pictures because I kept taking pictures, which I thought to myself, I'll only have that left. So I admit that I haven't stopped taking photos, small videos, and so on. And gradually, my relationship with her changed, that is to say that I wanted, I think, I created a different relationship with her. That is to say yes, she is dead. Yes, she won't come back, but she's still alive in, that's what I told you, in nature, in everything that's light, beautiful, a star, a sign, something.

There is no word to call a parent who has lost a child

This expression of "mom" that we often hear in the discussions of women who have experienced this. It seems right to you or not, it is in fact that. Whether it's a little angel or not. I don't know if he's a little angel anyway. He is a little child who is very pure and who is dead. So yes, it is an angel somewhere. There are no words to describe parents who have lost children. So when you lose your husband, you're a widow, you're a widower, but you're an orphan. But a mother who loses her child or a father who loses his child, there are no words, so I find it fair enough that it was invented, mommy we like it or we don't like it but it exists and it's pretty. Then why not but I didn't know this term.

And it's true that I find it really pleasant, that, as time goes on, it's less taboo that we talk about it because when my daughter died, I said to myself several times: "But where are the parents who went through this? where are they? so I've never heard of it, never seen it. I had heard of people who had lost children and it was thanks to Instagram where I was able to create a small community of parents who had lost their children without having... this kind of shame to shock this kind of anguish, of being badly judged, badly looked at, and I admit that it helped me enormously to be able to put photos of my dead daughter without it shocking or disturbing.

What would you say to a woman who has experienced perinatal bereavement?

It's very complicated. I have already thought several times. If she really comes to me, and she asks me for advice, it's heavy with meaning, that is to say. It's a big responsibility. Afterwards, I think I will answer like the mothers who called me or sent me emails, I will actually answer them, that's what I did. Here are the addresses where I have been, the people I have met. I've been really fighting for 4 years. The word is to try to get out of it and this is the path I have traveled. Afterwards, it's up to you to take, to do or to see what I did. But when you go back home, you have all these details, you have the child's room, the stroller, the clothes. Everyday life, unpleasant phrases, looks, reactions.

You no longer know what your name is, who you are. And I know that I wanted to fight for my 2 daughters to get out of it and I told myself that I would never manage it alone. I asked if there wasn't a psychiatrist to follow me because in fact we don't think enough about the fact that everyone doesn't have the money to put in a psychologist every week for a follow-up which is still medical. Finally I went to see psychologists. It ended in a rather catastrophic way, it was not suitable at all.

Until the day I heard from an association called SOS Préma. And on Friday, a psychologist named Myriam listened to parents of premature children in mourning and finally free and anonymously on the phone on Friday. So. So I called him. First time, I didn't come across her, she was already with other people, so I repeated the week after so it was long, but I was waiting for it a bit like a "date". I said to myself OK, I am going to have this appointment and it has been extraordinary. A click. She did me a lot of good, it was extraordinary, she understood me, that is to say I told her things right away. She had the click, she was able to explain to me, put words to feelings, it was extraordinary.

Psychological support? She should be refunded!

It is extremely important. To talk and offer reimbursed help to parents who are going through terrible things because we can't all afford to pay a psychologist every week because it's every week. Me, my psychiatrist, it was every week. She was extremely available by WhatsApp, by text message, she was really kind. She was present, it was really exceptional and afterwards, it's a bad thing. Well, I mean, it's medical, so it's a treatment. I don't know if I expressed myself well, if I was very clear, but I still find that it's something that we should offer to parents who are in this situation. Me, I had the chance to come across this psychiatrist, but after 6 months. - You have to search, search, - that's exactly meeting people, don't hesitate to slam the door if you don't feel at all comfortable with a psychiatrist. - Which is difficult because when you are fragile, you can come out of certain meetings more fragile than you came in. It was complicated. Afterwards, I did a lot of things too. I did whatever came up. To get better like acupuncturists, hypnosis, MDA, I think that's how it's called. A lot of things, just to get better and I said to myself, now, I have to heal myself. Because I was unable to be in real life, it was like I was on a sidewalk and life was passing and I couldn't move. And life was a TGV. That is to say that if I moved forward, I would die because one dies when one is on the tracks of a TGV and therefore I could not move, it was impossible for a year, that was it, that was impossible. I couldn't move.

Today, Castile is still there

And today, Castile is still there. He is part of the family and it is better. I spoke about Castille not long ago with a person I had just met, who said to me: "It's weird, it seems that you are not affected at all. You can talk about it in a completely natural, normal way", and then I said to him, "I'll stop you right away, it's modesty. It's that - so it seems a bit contradictory on the fact that I answer these questions - but no, it's modesty, I don't want to see the suffering and sadness in the eyes of the person I'm talking to, it's modesty because that she is my daughter, it is my pain.

What is very difficult with people who have lost a child is that it is a scar and an invisible handicap and that is extremely difficult, if only for the people opposite with whom you speak and who are related to you. But even for you from time to time, it brought me some pretty difficult times because yes, we don't want to pour out our hearts, yes, we don't want to be sad, to cry all the time, but the pain is there, that is to say for me I'm scarred all over my mother's chest, it's but afterwards I have to show it, but it still takes a little bit of delicacy.