Dear Doctor X, you will most likely not remember me, I am Katia, Angelo’s mother. Angelo was born in his hospital on 26-03-2010.
March 26, 25 weeks.
That day the contractions began, the possibility that Angelo was born alive were very few, because besides the severe prematurity he was also in fetal suffering.
At 8.20 pm, with a very tender cry, my little wrinkle of 670 grams was born with two turns of the cord around the neck.
In the delivery room they were all very nice, obstetricians, gynecologists and neonatologists.
Immediately in intensive care.
Another world, another dimension .
I saw Angelo again the next day.
No one had prepared me for what I would see, no one had prepared me for the fact that I would see more threads than my son’s skin.
No one had prepared me for the sound of those alarms that even today, years later, if I hear them, I go free diving.
If they had prepared me maybe it would have been different and I would not have left that room with a real panic attack and the fear of not being able to re-enter.
We spent 24 days in that department.
The busiest days of our life. On a human and professional level, I can’t complain about anything. They did everything they could and more for our son.
They have always made us stand next to our child, helping us to live those days with him in an almost normal way, that is, giving us the opportunity to do everything that parents do with their children.
How to change the diaper and everything we could do through the incubator.
Despite the serious prematurity, Angelo did not have any major problems in those days, never an infection, only the classic desaturations of premature babies.
April 8. I feel something is wrong.
Angelo cries a lot, it’s an inconsolable cry … usually with my caresses and my voice always calmed down, not that day!
I ask the nurses for explanations and they tell me to rest assured, that Angelo is a little paraculino who wants the attention and pampering of his mother.
I insist that this is not the case and that my son is ill, but they tell me to go home and be quiet.
We go home and I always have that bad feeling.
It’s nine in the morning and I’m on the sofa pumping my milk ( how clear after so many years is this image of me pumping milk for my little wren ).
The phone rings and it’s my husband who tells me from work to get ready to go to Angelo’s.
During the night Angelo had an abdominal hemorrhage and it is serious. Yes, it is true, Angelo was a great paraculo, but that day his mother’s heart understood that this time it was not about paraculaggini but something else.
They really did everything that day to our son and we saw everything two parents should ever see their child do .
They allowed us to be with him all day and for this I am grateful, but still today I wonder if it was good for me to see all those “tortures” they did to save his life. It’s eleven in the evening, we go out for a few minutes to get some fresh air.
We go back, the doctor beckons us to get closer to our son… .with his shaking of the head we understood that the end had come.
We promised our son that we would be with him until his last breath and he waited for us.
We approach him, our hands inside the incubator …
the lines of the heart and oxygen that go down more and more.
But he wanted to leave us in a way that we remembered him not only with pain, but also with such tender sweetness.
When the two lines were almost flat, he greeted me by squeezing my finger and turning his head towards his father with an extremely serene face. They asked us if we wanted to hold him. They asked us to wait outside just long enough to unplug them. They had prepared two chairs next to each other and when they asked us who wanted to keep it first, my husband replied “ give it to his mom ”.
I held my son in my arms for the first time, sang him a lullaby for the last time and then placed him in his father’s arms. I thank them for this, but after with the clarity that is acquired, I would have liked so much to hold my son in my arms not with the shirt but at least resting in my clothes and not give him a basin with the mask. All this because we had to say goodbye to our son in the same room as the other little boys and therefore rightly obliged to dress appropriately. In these cases they should give the possibility of being intimate in this last greeting .
Around two in the morning we leave our son and go home and always with hindsight we wondered how they could let us go like this without even having had any adequate support.
We lacked that professional figure that I believe is of essential importance in that department, we lacked psychological support … in 24 days I have not seen a psychologist in that department, a support that could have made the difference in those many moments of despair that we lived.
The nurses and doctors, on the other hand, were all very involved in our pain, so much so that the next day when we returned to the ward to ask where the chapels were, I had to console a desperate and tearful nurse as a mother for the death of the my baby.
Here, in my opinion in these departments in addition to giving support to parents, it would also be essential to give it to the operators of these departments who are unfortunately quite often in contact with the death of children.
Another important thing that I didn’t feel accompanied in the right way was the fact that no one told me I could dress my son. Angelo was left with only a diaper and a sheet and I had nightmares for a long time and I cursed myself for leaving my son in the cold. None of them, despite knowing CiaoLapo, referred us to them. Only thanks to my Gynecologist I learned about this association which has given us the possibility to continue to believe that one day you could continue to live after the death of your child.
My dear Doctor X, you may be wondering why this letter of mine, why HER.
Because Angelo immediately after coming out of my womb passed to her loving hands and care , because my baby was not born as usually all babies are born, that is, at full term … my baby was born at 25 weeks with PROM at 21 .
Angelo was in NICU for 24 days, despite the seriousness of the situation due to severe prematurity, Angelo was a healthy child and did not have any major problems other than respiratory ones. He was a very active child, so much so that many of you always said that we were wrong to call him Angel, because he was anything but an angel: all of you very affectionately nicknamed him “our little devil”.
Unfortunately on April 19, like a bolt from the blue, his health fell due to an abdominal haemorrhage and at 11.45 pm my son passed away in my hands.
I will try to explain the various reasons that lead me to write to you, even if believe me it is not easy at all, the emotions are really many and strong.
First of all to thank you all, but especially her who has taken such great care of my son from day one.
Without you I would never have had the joy of “living” my baby, (and given the gravity of the situation, I think those 24 days were the best gift of my life) you were really so dear, loving and exceptional in everything .
As you can well imagine, it was not and still is not easy to face and work through such great grief and grief!
In this new and very tiring journey we were lucky enough to find the CiaoLapo association, thanks to our gynecologist.
CiaoLapo is a non-profit organization founded on 11 April 2006 as a scientific (research and training) and welfare (bereavement psychology, specialist support, peer support) association. The main purpose of CiaoLapo is to provide bereaved parents with integrated help (medical, psychological and practical), and structured and qualified psychological support.
CiaoLapo was our lifeline, only thanks to them can we say today that we have started living again and not just surviving!
After almost 31 months I feel that something is still missing, my heart is not yet at peace: above all, it is I who am not at peace with myself!
At first it was all a pain, it was all muffled, we didn’t even realize what had happened to us.
But after some time everything comes back to the surface, we are more lucid and realize where we have been missing .
After his death, Angelo was lovingly washed by your nurses and given to us with a pure white sheet.
Here, this is where my heart suffers tremendously, for months I have had hallucinating nightmares.
I felt bloody guilty for not having dressed my baby … “my baby is left alone with the diaper, who knows how cold he’ll be suffering from mom’s puppy !!!”
For months I cursed myself for this lack of mine, but luckily after some time I realized that maybe it wasn’t all my fault …, because I realized that there was no one in those devastating moments next to us, no one guided us to greet our son in the best possible way !!!
Doctor X, it is very right that in TIN there are associations that help the parents of live premature babies, but I wonder why for us parents who go out with empty arms and with a broken heart an accompanying greeting service has not yet been set up , which is considered part of basic standards of care in other European and international hospitals.
Doctor Claudia Ravaldi (president and founder of the CiaoLapo association and mother of Lapo), has already had, on 7 December 2011, with the approval of Prof Y, a meeting with the two psychologists of the maternal and child area to evaluate a collaboration and drafting of an operational protocol for assistance to bereaved parents in TIN: this meeting, unfortunately, did not have any follow-up.
Doctor X, this is where I ask for a little help from you, could you help us parents and operators of CiaoLapo (me, doctor Ravaldi and another mother who always lost her triplets there in 2006), to promote the famous “operational meeting” to start an adaptation to the Care of the family of the dying newborn in your NIC too ?
I would be really grateful if you could help me, because believe me, maybe I really miss this to be able to put my heart in peace !!!
Thank you in advance for your kind attention. Usually a letter closes by writing: “Yours sincerely”, but I prefer to close by sending her a sincere hug!
This letter was written and sent, twice, in 2013.
To date, Katia has not received an answer.
World Prematurity Day also has this goal.
Allowing caregivers and parents to fight side by side, on the same side , and improve care, whenever possible.
It is not possible to cure death, but it is possible to take care of the pain that remains: it is not a slogan.
Soon the old service managers who had to meet us for the protocol four years ago will retire, and we will send the letter again, together with all the testimonies of the parents who in the meantime have lived the experience of NICU, to Dr. X , and we will ask again for a comparison, with the new, hopefully more sensitive managers of the service, in the interest of the children, their parents, and the carers who care: fortunately there are more than we think, but they are barely noticeable, covered as they are from the loud noise of a few careless colleagues.