The pointless, stubborn treatment on Davide (translation)

This is my translation of an article that was published by the Bari local edition of La Repubblica. The original, in Italian, can be found here. Any mistakes in the translation are to be attributed to me only. I claim no credit to the original article.

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“The pointless, stubborn treatment on David”
By Francesca Savino, translation by Daniele Nicolucci

The doctors wanted to cure him as much as they could to make him live as long as he could. The parents wanted him to be cured, without getting to heroic treatment [stubbornly administering therapies when it's clear that there is no hope for any improvement]. The court first suspended the parents’ parental authority, then returned it provided that they followed the doctors’ orders. Davide, struck down by Potter’s’s syndrome, slowly and relentleslly worsened to the point that not even doctors could do anything more. He died on July 18th, at the Bari general hospital. Today, his mother explains the reasons for their fight against heroic treatment.

Maria Rita Vigilante isn’t left just with the sorrow for the loss of a son. The mother of Davide, born without kidneys and ureter because of a very rare illness called Potter’s’s syndrome, a week from the child’s death still wants to fight: «so that this doesn’t happen again». “This” is the eighty days of life spent by Davide, fed alternately by a tube and by a bottle, between seven-hour dialysis almost every day, and crises that forced him to resort to artificial ventilation. In the meantime, a court took and returned parental authority to his parents, admist controversy and public petitions.

Did you know anything about the illness before April 28th, the day Davide was born?
«No, the diagnosis only came four days later from the United Hospitals in Foggia. We have long been encouraged to set our minds at rest, but at one point dr. Magaldi asked for our authoritazion to have Davide undergo dialysis. We asked to be allowed to think for a day, and he dragged the judiciary in: he has been dishonorable.»

Davide was then moved to the Giovanni XXIII hospital in Bari, following a court’s decision. How did you feel about having your parental authority taken away?
«We felt violated. Our son was taken away from us while we were trying to understand what was better for him. Then it took weeks before we could be heard by a judge. Heard, not understood.»

The authority has been returned to you after twenty days.
«It was a decision that forced us to follow the directions ordered by the doctors, under the threat of a new suspension [of the authority]. A humiliation: the top clinician, dr. De Palo, ordered me to stay at the hospital 24 hours a day, but our two other sons were with my husband and I in Bari. For several days the oldest of them, who is 6 years old, ate in the ward on a small table covered with medicines.»

Davide was the first child affected by Potter’s’s syndrome to live more than 39 days. For him, people not only spoke about heroic treatment, but also about a “miracle”.
«I don’t believe in miracles. If God existed and wanted to work a miracle, he wouldn’t have been born like that. There is no medical evidence, among the 400 children with Potter’s syndrome, of any successful case. Forcing a newborn child to undergo invasive treatment, knowing that it never worked, is simply fierceness.»

Didn’t you feel the need to endeavor the impossible?
«We restlessly researched the topic, we listened to many opinions. My son was born with a conviction upon him: the prognosis for his illness is “constantly inauspicious”. He underwent tremendous surgeries. They applied a cathether to his navel, then another one to his jugular which Davide removed on his own, then to his groin. The cures were supposed to have him feel better, not increase his pain.»

Looking back, would you have ever agreed to dialysis?
«Dialysis wasn’t even supposed to begin: it doesn’t make sense to have children with Potter’s syndrome undergo dialysis. All researches agree with that, and the WHO itself gives precise indications about not reviving children with this syndrome. Medicine is fobased upon experience, but in the case of Davide nobody took documented experience into consideration. Once dialysis had begun, however, it was impossible to suspend it.»

For some time, there has been debate about heroic treatment also for the case of Eluana Englaro [a woman who has been in a vegetative state for 16 years, and had clearly asked her parents not to prolong her life, should she ever find herself in such a state]. What do you think about the fight run by her father to stop feeding her?
«I hope he wins it, and I am close to him. My sensitivity and the experience I lived reinforce my being against heroic treatment and against the [catholic] Church’s intervention about these topics. I am thinking about what Luca Volontè [a member of parliament known of the Union of Christian Democrats party] wrote against us on “Liberal”: he wrote that we are cynical, that we wanted to kill our son, sacrificing him as in the ancient times, just because he was not perfect. He hurt us, and I’m still angry about it. Nobody can step onto others in order to state his own alleged truth.»

Did anyone help you through that time?
«Many, most of whom were strangers: the over two thousand people who signed the petition to have our son returned to us, Mina Welby [widow of Piergiorgio Welby, who was forced to depend on machines to live and fought a battle for euthanasia], lawyer dr. Vaira, dr. Zingariello, senators Poretti, Marino and Cappato, the Luca Coscioni association, the mayor of Bari, enterpreneur dr. Maizzi who paid for the transportation of the body from Bari to Foggia. I also have to thank the moving humanity of dr. Giordano and dr. Messina from the Giovanni XXIII hospital, and professors Laforgia and Rizzo and their teams at the general hospital, including the nurses who treated Davide with the love and cures that they would have had for their own son. And I thank Michele Farina and his wife Chiara of Agebeo, who hosted us in Bari: their association gives a concrete help to those in need.»

During these months, did you get in touch with other parents who had similar experiences?
«Yes, and lately we have been contacted by a worker who lost two sons to Potter’s syndrome. He asked us whether we are vegetarians, and when we said no he felt relieved: his wife and he had been accused of causing the illness through that. These superstitions probably serve to hide other things. My husband is a worker too, and works at the Fiat plant in Melfi. We know about several cases of severe malformations among the sons of the plant’s workers.»

Do you think that there is a link?
«I am unable to claim that there is a cause and effect relationship, but it’s a coincidence that makes me wonder.»

National healthcare

Italy, unlike the United States, does have a national healthcare system (servizio sanitario nazionale). It is funded through indirect taxes and allows citizens to obtain health assistance almost for free.

The most common example of it is the so-called base doctor (medico di base), to whom you can go to get help on minor matters and to have drugs prescribed. In case you need something more specific, he or she will refer you to a public specialist by filling a medical recipe (really! it’s called ricetta medica!) that you will hand to the public hospital to book your visit. More likely than not, you have to pay some money to the hospital for it; prices vary depending on the kind of the examination, on the region you are in, and sometimes even on the hospital. Last year, I paid €22 (around $33) for a dermatological examination, plus some €10 ($14) as an additional tax that the region had decided to impose. Not too bad, considering that if I had gone to a private specialist I would have wound up paying no less than €100 ($140).

Everything fine? Not really. The waiting lists tend to be very long, including for simple medical visits. I had to wait over a month for mine, and it’s not uncommon to wait several months either. A few weeks ago, the media briefly reported how a woman, during her 8th month of pregnancy, was told to go back to the hospital after 5-6 months to have some amniotic test done to assess the health of the soon-to-be-born baby. I cannot find any newspaper report about it right now, but I swear I’m not making this up.

However, you can have pretty much any exam and surgery for free, including organ transplants. Especially for surgeries, though, there are two things required from you: that you live long enough to be summoned for it, and that everything goes smoothly. No, I’m not talking about how your body reacts to the surgery. I’m talking about how it’s carried out: it often made the news that some people died, or otherwise felt very sick, after surgeries because the team accidentally forgot items such as scissors and gauze inside the patient. Again, I’m not making this up. Have a look at this article (in Italian): this man died after 7 months of agony following a surgery because they had forgotten a 7 x 14 cm gauze and a “piece of fabric” inside him. And you have to hope that nothing else goes wrong, because you might, say, die because the hospital undergoes an electrical black out (it happened to a 16-year-old girl last year) or for uknown causes during a routine tonsillectomy (it happened to another 16-year-old girl a few days ago, in the same hospital).

Bad hospital, you say? Yes, I don’t deny that, especially since, being in the South, it’s probably in the hand of some Mafia-like criminal organisation. However, in the biggest hospital in Rome, the “Umberto I”, patients are moved from one ward to another, and to and from surgery rooms, using underground tunnels with water leaking from asbestos pipes (absestos, amianto in Italian, has been banned because proved carcinogenic) while cute pets such as rats and giant cockroaches run through forgotten boxes of forgotten radioactive and contagious material to keep them some company and, one would hope, encourage them that they – these beasts – are nothing compared to what they might find in the surgery room. A journalist managed to get into the hospital as a medical orderly and reported it all; here is an article about it.

Funny enough, the only dental care provided by the national healthcare system is the fixing of cavity. Anything else is not covered, and you have to go to some specialist on your own and pay for it out of your own pocket, possibly after agreeing on some loan.

This is not, anyhow, to say that everything is wrong with it. There are very good professionals in the public healthcare field, and I am confident that they outnumber the unreliable ones. The main problem lies in the very deep and unbreakable bureaucracy that permeates the whole country. I will write extensively about it in future posts.

Oh, and by the way: in italian, “drugs” (droga / droghe) are illicit ones, like marijuana or cocaine. Meds are medicinale / medicinali, or in everyday speech, medicina / medicine.