20 November 2010

stable

The previous post was probably the most dramatic of all. And somehow after that I had the feeling that I am done. I do not know if anything else will follow in this blog. Maybe yes. Maybe after a break. Anyway in the last time I did not feel the urge to write anymore. Partly because by posting the letter I reached a sort of blog catharsis after which much less or nothing is possible. Partly because I have been busy in the last time applying for a job as a developmental consultant on a neonatology department of a big hospital (making sure that vulnerable newborns get the best possible care and chance for a good development). It would be great to get this job. Somehow my personal experience will make sense then and I will feel that I have done something good and productive out of a personal upheaval.

But maybe I will come back and write here sometimes. But then it will be mostly funny I think. Funny comments from people. Contradictions: inside myself, among my dear ones, from child professionals and from books over raising children that I read. I would like to continue to highlight how litlle we know about the twilight zone of the relationship between a (new) mother and her (first) baby and young child.

15 October 2010

birth story

The previous post reminded me that I actually never thought of posting on this blog my "birth story": a couple of pages I have written as part of the recovery process. I wrote those at the end of the EMDR treatment I followed. Actually, it was in one of the EMDR sessions that I envisioned writing that letter and posting it on every wall of the hospital where the birth took place.

Here comes the letter (anonymised to protect the privacy of my son and of the hospital staff involved). This was written before the operation and before we knew about the genetic syndrome:

On the ( ) 2009 I gave birth to my son, David. He was born in the ( ) hospital. It is one of the biggest and one of the best hospitals in this country so, accordingly, I expected only the best of treatment. I was bitterly disappointed. Only now, exactly ten months after the birth, with the help of two wonderful psychotherapists, I start to apprehend what has happened to me. What has been done to me. The worst of this story is that I am not a character in it. I have been mostly invisible throughout. It is a story about medical nurses and doctors and midwifes. I am not in it. Or not in the way that I expected to be. I am a character in this story as a piece of human meat on a table. As a brainless, faceless patient. As a figure in hospital statistics and a patient number.

All the characters in this story have failed me in many ways. They failed to listen to me. They failed to listen to each other. They robbed me of the birth of my first baby. They robbed me of physical and emotional contact with him in the first 9 days after the birth. They robbed me of the rest and care I was entitled to as woman after birth. They robbed me of my voice and of my personality. They robbed me of my right to choose, or at least to participate, in what was happening to me and to my baby.

These are the real characters of the story:

My gynaecologist: When I was 6 months pregnant (for sound medical reasons, I take it) she advised me to give birth in the hospital and to give up my plan of giving birth at home. She promised the best of care. She encouraged me to write a birth plan where to outline my ideas and my view of how things should happen. She assured me that although I will not be in contact anymore with the midwives’ practice I was going to until then, I will be assigned a midwife, a more experienced one with medical knowledge (a better one, I understood) in the moment when I will come to the hospital to give birth. None of this happened. When the moment came, nobody seemed to care about or to have read my birth plan. I was not assigned a midwife. What I really blame her for, besides raising my hopes for a good treatment unjustifiably, is that I had done some tests when pregnant and I asked her about the results of the tests, and she said: do not worry, if there was something wrong, the lab would have called you. After the birth, it appeared that in my medical file it was written that I had a vaginal infection (which I never treated because I was not aware of). The baby was given antibiotics immediately after birth as a result of this piece of information from my file.

The midwives: What actually happened when the labour started was that whoever was on duty that night also took me on her agenda among many other patients. That was not my meaning of being assigned a midwife. She was nice, but she left me basically alone with my partner for the entire night. This midwife also went home in the morning, at the peak of the birth process, and another midwife took over. The second midwife I remember as a sort of doom figure. She was coming in to see me (randomly, it seemed, or according to her schedule and other patients) every two and half hours or so to check the dilatation of the cervix. She was announcing the number of centimetres with an equal face, and leaving. I requested to be checked while lying on the side, because on the back was almost unbearable (the previous midwife agreed to that). She refused. She also refused to send an intern away when I said I do not want an intern witnessing this birth. After that, I was under her power and our communication sort of reduced to this: I swore once when I heard for the third time that my dilatation was still 7 centimetres. I said “oh, no” when she asked me to put my legs in stir-ups (in my birth plan I wrote that I want an active birth and a vertical position). She simply did not hear my comments throughout (I was not screaming, and not saying much, but enough for a more sensitive person to have tuned in and react). I saw her later, after the birth (in an attempt to communicate what has happened to me), and I could not remember her at all. She and the gynaecologist who made the meeting possible (I thank her for that) made it sound as if I was not completely aware of my surroundings at the birth. My explanation is that there was no communication between me and her, hardly any contact, and no expression on her face, so how could I have remembered her? (she did look more lively at the meeting)

A tall man: The only actual birth guidance that I got in 14 hours of labour was a 5 minutes appearance of a tall man dressed in a white coat, who instructed me briefly how to breathe. That short intervention helped a lot. Later, I asked my partner about that episode and he is convinced that man was actually the anaesthetist. (!!??)

The doctor-assistant: After 14 hours of labour when I had been mostly alone, all of a sudden and without explanation, the room was full of women. They seemed very busy and very involved with whatever they where doing with the lower half of my body. One of these women seemed to take charge and she actually made eye contact and encouraged me and instructed me how to push. The contact with her was the only truly helpful and respectful contact with the medical personnel that I got in that hospital. However, she was not “the boss” she was a doctor-assistant.

The “boss” (the birth doctor): In the last maybe half hour of the birth process, a man entered the room and proceeded to the table where I was lying on my back. “I do not want any more people to be present” I said. That elicited some nervous ruffling and some smiles from the other ladies and they let me understand that he is “the boss.” He seemed a nice guy. I take it that he was probably watching behind the mirror (although my partner said at some point that I do not want the one-way mirror to be used, and his request was denied on medical grounds) and timing his intervention. He was also probably in telephone contact with the midwife (I heard the no-face woman talking important stuff with someone over the phone at some point of the labour). However, he was nobody to me. I had to accept, in the last half hour of the birth process, that he was the one in charge and he was taking responsibility for me and my baby’s wellbeing. He decided to use a vacuum pomp and speed up the birth, because in his opinion waiting any longer would have endangered the baby’s life. His name I found out only later. He came to see me unexpectedly some 4 days after the birth (the day before I was discharged). I was having lunch when he arrived. He set down on my hospital bed and asked me about the birth and about the baby and if I had questions. I had lots of questions, but how do you formulate those when a guy interrupts your lunch, in a communal room with no privacy whatsoever, and you realise (after some seconds of doubt) that he was the same guy as the doctor in charge at the birth. (However, I appreciated the chance I had to see him again and give some feed-back)

Immediately after the birth: My baby was taken to intensive care immediately after he was born. I can remember a small plump doctor looking down at me and explaining something about the baby before he was removed from the birth room. I did not register her words.
Some two hours after birth I was just left alone in the room where I gave birth. My partner ran after the baby-team (we discussed such a possibility ahead of time). The rest of the medical stuff vanished, after they closed my episiotomy. I was just lying there staring out of the window and waiting. Some nurse was coming in from time to time attempting to wash me, when her pager would start beeping again and she repeatedly apologised that she can not go through with the washing plan. I found that mostly funny; I did not mind just lying there alone for a while and take it all in, having some sense of accomplishment. It went down hill from there.

The nurses: During the following days I met two types of nurses, lots of them: the ones who where taking care of the baby and the ones who where supposed to look after me. The first ones where by far better. They were encouraging me to come see the baby as often as I want (however, I was very weak and in pain, and I had to travel a lot in-between my section and his section of the hospital. Once I was in the baby room, I had to stand or sit, which where both an ordeal for my body.) They were giving me breast-feeding tips. The little information that I received about my baby for the first days was coming from them.
The baby room seemed beyond my reach, run according to rules I had no idea of, and knowledge that nobody shared with me. The nurses basically fed, cleaned, cooed, hold and watched my baby for the first 9 days of his life. I was a stranger from another planet visiting him. I felt absolutely useless. I was trying to make contact with him the way I could. He was mostly sleeping anyway and all those wires and machines he was connected to did not encourage me to pick him up and hold him. Once he half-opened his eyes, looking around without focus, and I tentatively touched his face. The most shocking thing happened. So shocking that I did not realise it happened until months later. A nurse came to me and draw my attention to the fact that the baby was sleeping. I should try to put myself in the place of the baby, she said. Would I like to be disturbed in my sleeping by someone touching my face? No, I probably wouldn’t, I said. I stopped touching him. After all, this was a nice nurse, one that took pictures of the baby for us.
Another shocking moment was when I went down to the baby room and the bed of Johan was empty. I managed to keep my mind steady, find someone and ask where he is. He was at a scan, they told me. With whom? Why? Why am I not informed of all the tests that they are doing on my baby? Why am I not invited to go with them and offer the baby some comfort (if I can) or just witness? I am in the same hospital for God’s sake, not on the moon! All these questions came only later.

The second group of nurses were the ones supposed to be taking care of me. Some were nicer, some were not. Some were making me feel absolutely not welcome. They were sparse with comments and information. They were mostly going through the motions: giving me pills, bringing me lunch; Trying to discourage me from taking painkillers, even if the “boss” in his visit said he will prescribe some for me; Forgetting or not bothering to mention that the iron tablets they were giving me (for anaemia) produce serious constipation. I already had unbearable pain in my bottom and around it. The enema that followed, which I performed myself alone on the bathroom floor (with the help of a tube with some sort of paste that they gave me), was one of the most debasing things that I had to do in all my life.

These nurses showed no awareness whatsoever of the difficult situation I was in, with my newly-born first baby in intensive care and out of reach. It all seamed very matter-of-fact. I was getting increasingly confused and depressed, and as a result, careless with my appearance and my environment. I was also having physical pain getting in and out of bed for trips to the waste basket at the other end of the big room. The comment of one nurse was to start picking up the mess around my bed because she was tired of cleaning after me. Before I left, I realised that there were special waste bags available, attachable to the bedside table. Giving me one of those would have been so much easier than scolding me as if I was a spoiled brat. Another nurse, or maybe the same, came to take my temperature, because I reported feeling strange. You do not have temperature, she said, you are ok, and she left. Much later, when I got home, my homoeopath explained that a woman after birth has hormones all over her system which can give all sorts of strange bodily sensations that could feel like getting sick (warmth, perspiration, etc.) Instead of such an explanation, in the hospital I felt a hypochondriac. Another time I asked for a different mattress, because the one I had had a sort of valley in it from all the bodies that slept there, and was giving me back pain. They easily exchanged my entire bed for another one (they are on wheels), but this happened after I had to ask for it three times in the course of a day and later I also heard from a nurse that I should not make such requests exactly after the linen of the bed has been changed.

The most crazy making of the days after the birth was that I was supposed to rest and recovered while following three strict schedules that were in conflict with each other: the schedule of the baby (tests, meals, bath, etc), the schedule of my department (meals, check-ups, etc) and on top of it, I was supposed to express milk every three hours, to get the flow going (That never worked in the hospital, because I was so confused and stressed and in psychological and physical pain. Later, at home, I managed). Once I left my lunch standing waiting for me for an hour of so, and although I clearly said, please do not take away the lunch yet, the lady in charge with cleaning up made as if she did not hear or understand and took it away nevertheless (my roommate did hear me from the other side of the room). After 4 days the nurses announced that following morning I had to leave. I complained that my baby was still there and that I thought I was allowed to stay 6 days. They dismissed my questions as if I was a troublesome person who does not listen to the rules. By the time I left I was very annoyed with the nurses and they were very annoyed with me. What bothers me most is that while “recovering” there, I missed almost all the right I had for kraamzorg (post-natal care at home in the Dutch system). Most health insurances cover kraamzorg only 7 days after the birth. Luckily, I still had right for three days of home care and those three days with a lovely older, experienced nurse were the only moments when I felt listened and pampered and understood and taken care of.

The blue-eyed doctor (the paediatrician): Strangely enough, during the first days in the hospital I never happened to be at the baby room at the same time with any doctor. Finally I met a nice blue-eyed doctor (she was just performing the heel prick test on my baby) and she said that if I have questions I can go to her. It was only after I got out of the hospital that I asked for an appointment with her. Exactly one week after the birth she sat down with me and explained in detail why my baby was still in the hospital. However, I still today do not manage to get the entire picture. Moreover, I now think that I should have been informed from the beginning, as part of some procedure, and not just being left to the chance of meeting the doctor on the corridor or in the baby room and being given the option of asking questions if I want.

Basically, what happened was that they suspected from the first moment, because of his appearance and face features, that David had some strange form of genetic abnormality. From that point on, he was closely watched, and everything he did which was a bit outside the standard they were regarding as potentially connected to the disorder and thus, dangerous. That is the only explanation I can find for the fact that they kept him there day after day for things that any normal baby does, only they are not constantly monitored and thus, get away with it. Every day I was presented with new reasons to keep him longer such as spitting his milk (formula given very precisely at certain intervals and in certain quantities), not gaining his before-the-birth weight soon enough, having two random moments of bradycardia (heart rate of less than 100 beats per minute) which stopped by itself, too little salt concentration in his blood, which also went away by itself.

The way the blue-eyed doctor first told me about it was like this: I met her at the baby bed at the heel prick. She lingered on a bit after that and I had to hear point-blank that: his eyes are too far apart from each other, his forehead too vaulted, his nose is too flat, his mouth too small, his ears a bit strangely positioned, his fingers crooked, his nipples too far apart from each other. I left the baby room with the message that I gave birth to a monster. However, luckily, looking down at him I just saw a sweet, normal, new-born baby that I was longing to hold and get to know.
Later, at the appointment I made with her when I was out of the nightmarish hospital and thus, could think more clearly, she gave me a very detailed explanation full of medical information and facts. I did get the medical terms. I did get the Dutch language, too (she suggested to call an interpreter, if needed). I still did not get the way they treated him and me. What about communicating better? What about making a phone call to the “mothers” section to inform me about the whereabouts of my baby and the tests performed on him? What about the mother-baby bond? What about making me feel incompetent as a mother, since the nurses are taking care of my baby? What about being asked to travel a long distance and to sit down with pain as only option to seeing my baby? I did not ask all that. I did ask: What about breastfeeding? (Don’t worry about breastfeeding if it does not work, she said, I was also not breastfed and I am doing fine)

Doctor XX (the genetics specialist): I never saw her. I talked to her on the phone once. The day the baby came home we got a piece of paper with information about following steps and test results still to come. For the genetics test, we were supposed to call a number and make an appointment ourselves. I made an appointment for over three months, with doctor XX who apparently also saw David in the hospital. Later, I got a phone call from a secretary asking me if we could change the appointment because doctor XX could not be present on that day and she would very much like to see David, too. The new appointment was about one month later (they are busy at the genetics department). I had to wait one month more to hear if my baby is genetically abnormal or not. Finally, when my baby was 4 months old, I went to the genetics department. I was met there by what looked like two rather young doctors (or assistants, or interns?). Which of you is doctor XX, I asked? None of us, one of them answers, she could not come.

The medical bottom-line of all the story is the following: My baby has no genetic abnormality. He has, however, a rather serious congenital heart malformation, which they failed to see at the ( ) hospital. The “normal” paediatrician at the Consultatie Bureau (the Dutch parent and child clinic) realised that at the 6 months check-up. In-between, I had two worry-less months when I thought that there is nothing wrong with my baby. I went back to the hospital and asked if there is any connection between the fact that he was in intensive care after birth and his heart malformation. No connection, they said, just bad luck.

David has to soon undergo an open-heart operation. Needless to say that I take him to another hospital. Meanwhile I underwent an intensive trauma treatment to help me make sense of the events around the birth. Such a pity that I could not be spared 4 months of needless worry and confusion, while they were looking for a ghost medical problem, to now be able to face the reality of an operation with a clean slate.

giving birth: good fun

Here I am, one year and a half later, smiling (actually almost laughing out loud by myself) thinking of the birth of David. That´s a huge change, compared with ten months ago. At that time, I could not sleep because I was bothered by nasty feelings and bad memories connected to the birth. Time had a huge part to play in this recovery, of course, but mostly, I changed gears after I followed an EMDR treatment

(more about that later - or earlier, because whoever reads these posts, will probably read them in reverse chronological order - so you already know about the EMDR - if you are reading in the future - that is my future while writing this post).

And now, I caught myself laughing remembering my partner one minute after David was born. They took him immediately to another room for check-ups (funny system, isn´t it? why could that not happen by my side? What were they protecting me from? or him?) I was not going to go anywhere at that point from the bed (or rather table?) I was lying on face up, but my partner was free to move. He ran out of the room immediately after them (after him), hands up like in cartoons, shouting: he is called David, he is called David. We hadn´t really actually agreed on that name yet, but we both liked it. It was so funny to see him like that, even then, that I considered it definitive, yes, he is called David, how can anyone deny that after seeing the father running out like that after his first born.

It was funny then, it is funny now. But meanwhile, for a long while, has not been any fun to remember anything related to that birth or to that building.