A TIN mother gives us her rich testimony as a mother, a woman and a professional who lived the experience of the death of her premature baby, describing with so much care and attention what is missing and what remains.
Lecco, 10 November 2017
Personal considerations and memories of my experience in neonatal pathology after the birth of little Joel 14/01/2012 and after his death on 7/02/2012
During the post-graduate course in perinatal clinical psychology we had a day dedicated to the child in the NICU. Watching the videos with the images of the neonatal pathology and its little patients, listening to those familiar sounds, the memories of the days spent in TIN after the birth of my little Joel, born at 23 + 3, were awakened in my memory. tears: my heart was beating hard, my hands trembled and I struggled a little to breathe. My mind was full of thoughts that came and went, considerations on my personal experience: that day I came to understand that no one guided us in the relationship with our baby, the “relationship” with a baby premature is not taken for granted, the Care totally absent.
Thinking back to my 24 days in tin with Joel but also in S. born in 2002 at 33 + 3 (two weeks in tin) I can say that I had strictly medical support: my vision has changed over the years, I have always considered myself lucky for the type of assistance received, impeccable from the point of view of medical communication of the various steps and the state of health of my children, but it all stops there.
No words guided me to approach them and start a relationship with them, no one ever told me you can talk to them even if behind a glass, you can sing them a song if you want, you can gently touch them.
Everything taken for granted? I would not say.
I personally did these things but in a fleeting way, with fear, feeling “wrong”, I didn’t know if it was right, if it was possible. Maybe I was held back, I thought even if not rationally that I was with him, if I touched him I would be too fond of him, as if an extra caress, an extra word, could raise my expectations of hope to be able to hold him and to be able to bring home.
Only now do I understand that these gestures I rarely made would have instead given me intense moments, unique memories that I would carry in my memory.
I miss not having touched him more, not having spent more time with him, I felt useless.
My presence in Tin seemed a waste to me, family life was waiting for me outside, at home there were S., my son, and my partner.
Inside a motionless time, the anxiety, the fear, the regret of seeing him in that cradle full of tubes, deformed nose, squashed ears, the little hand with long fingers hidden by a large bandage, all those sensors, noises and sounds that you learn to know.
They explain them to you quickly, everything is taken for granted for them.
I would have liked to have been welcomed as I saw in the video of the course. Every day with a “good morning mom” or “your child was good tonight” or “this night was tiring” and so on: instead after the long hand washing I entered the ward almost on tiptoe, almost transparent I approached his cradle and looked for signs of his state, I looked around in search of an exchange of reassuring glances.
I was looking in the eyes of the operators for an answer to my questions, a word that would help me understand my emotions or guide me to him.
I have rarely found this, everyone involved in his work, in his purely care-giving task towards these little guests.
I have nothing to complain about how instead they gave us all the most important medical communications, from positive signals to those in which it was urgent to intervene, up to the last one in which the difficult situation was breathed by the presence of the head physician and because it happened right in the his office. A sign that told me that the unexpected was serious, that the situation was irreversible. In simple words they explained the situation “when Joel’s tummy was opened to perform a resection of part of the intestine, we realized that he was totally in peritonitis, that every small movement of it led to bleeding”.
Obvious deduction in my mind, without gut you can’t live now what? Nothing we give you time to organize, go home have a bite, so we fix it and then come back to him to spend the last moments.
Like an automaton I performed what they told us, at home at the table with S and C I see myself sitting but I have absolutely no memory of what we ate, if we talked to each other or what we said to each other, the emptiness.
Instead, my image in Tin is clear with him resting on the nursing pillow, lying on my legs, I sitting on an armchair, what logo I look at, I touch his hand, I don’t touch it, I’m afraid to touch him, he is about to die , I can’t touch it, I just look at it.
I realize my breasts are about to burst and hot, the pads are full of her milk, I have to go to the other room to pump the milk, I have to go because I’m not in there anymore, it’s not possible, it’s bad I dream, the protagonist I see myself watched by my partner and by the operators on duty, they were discreetly present ready to intervene at our sign, I don’t know what we needed, they could tell us, lead to death, a difficult situation for everyone.
And after death? The fog in my brain, I just remember a nurse asking me if I had a dress for him? How could I have had such a small dress? His answer to my no was “then I’ll take care of it” I’ll give him something of ours. At the moment I said to myself “WELL, she’s doing it well”. Now I tell myself that he could perhaps ask me or make me understand that preparing it together, having me choose a dress or a hat, could help me in that failed relationship, could help me to materialize and touch death, to thaw a me who is only at home allowed her baby to cry.
I have no regrets because for how I was five years ago, for how I had always lived death up to that moment and had never met it so directly, they have always kept me away even from the death of my grandparents. It is better not to look at them, so you remember them alive and again “If you don’t want to, don’t come to the funeral” they said to me. Was I not prepared, ready? but are you ever ready for death? For how I learned to be in pain, for how I am now, that I know death a little more, I would have liked to hear other words, to be guided in choosing a dress for him, it had also occurred to me to go to buy it the next day, but at that moment it seemed an absurd thought, but it was not absurd I would have done something normal for my son, instead I had to go to the municipality to declare his death and then to the funeral home to choose his coffin and its small urn.
On the post-death nothing, the n. phone number of the hospital psychologist who works with Tin, jotted down in the corner of a piece of paper in case I needed it.
T. mother of Joel stardust
