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About the latest advances in fetal surgery - Some ethical reflections

Prof. Denys Pellerin

 

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On 23rd May 1959, 50 years ago, at Professor Marcel Fevre’s house, located rue de la Chaise, Paris, 7th district, not far from Le Bon Marché famous store, an agreement was finally made between provincials and Parisians to create a legal association, according to public law 1901, a French Society of Pediatric Surgery. Finally, provincials and Parisians would work together without any complex object but especially Parisians, willing to bury the hatchet among them.

The French Society of Pediatric Surgery (Société Française de Chirurgie Infantile) - “SFCI” was the acronym, met for the first time in the General Assembly on 5th October 1959 at “Necker - Enfants Malades” Hospital in Paris.

Lionel Coupris, our present President, good historian of our association, has already told you about it. I believe it is very carefully preserved in the archives. I was far away from thinking that this association which was born from the modest initiative that had naturally dictated me the privilege of being trained at the two enemy brothers “Necker - Enfants Malade” and “St. Vincent de Paul” Hospitals, will survive – and in which way - a half-century later.

I imagined even less then I would be: still alive 50 years later and would accept the cordial invitation of Lionel Coupris, to be the chairman of the meeting that you are attending, so many in Angers, today. Unfortunately, most of the founding members, our masters of that time, passed away. I have; you understand a touching thought and affectionate gratitude for each of them, who were my masters and your masters. I probably owe the privilege of being the only survivor among the 6 Parisians founder members to the longer life expectancy that has been recorded for the last half of the century.

It allows me to say, dear friends, that many of you will be the large cohort of centenarians in the XXI century. With reference to the new names of states and not of steps - that they are today in this new aspect of life, I hope as many of you can live fully happy life without any disability whatever their civil acts will be. It will give you the advantage from time to time, quietly to suspend for a moment our ambition for the future, our legitimate aspiration of modernity, and our necessary appetite of "ever more" and to go back in the past to reflect on the present.

You offer me the opportunity to do it before you, today. I appreciate the privilege and the honour.

Thank you, dear Lionel Coupris.

  

On November 18th 2008, from the platform of the Academy of Medicine, our distinguished colleague and friend pediatrician radiologist, Francis Brunelle, made a beautiful presentation on "The contribution of MRI and Foetal scanning in the diagnosis of foetal malformations”. Then we heard two papers on the research subject of the team led by our brilliant colleague, the obstetrician-gynaecologist, Yves Ville. You know them:

1. The first focused on the "Twin-to-twin transfusion syndrome" (TTTS) in monochorionic twin pregnancies, and their treatment - I quote – “treatment by fetoscopy surgery: laser coagulation of vascular anastomosis of the chorionic plate”.

2. The second related to the "Prenatal prediction of pulmonary hypoplasia by foetal endoscopic tracheal occlusion (FETO) in isolated severe congenital diaphragmatic hernia ".

Finally, Yves Ville himself concluded with an interesting presentation entitled "Recent developments in fetal surgery, technical organizational and ethical aspects”.

You can imagine with what interest, what attention, passion, what admiration I listened to the four speakers who succeeded one another to the podium. Their enthusiasm made me to relive the one which, more than fifty years ago, inspired us; me and my team from “Necker - Enfants Malades” Hospital. We were living the early days of surgical treatment of new-borns with previously lethal congenital malformations and only recently identified at birth.

I also remember our modest experiments on animals: interventions on foetuses of pregnant rabbits, externalized by hysterotomy, the first experimental intestinal atresia, which for the first time attested the "foetal origins of certain malformations, called congenital ". It was the title of the work that won the gold medal of the residency written by Bernard Courtois and which brought him a friendly dispute over the priority of the first publication on this dem- onstration with South African Christian Barnard (who was pediatric surgeon at the beginning of his brilliant career exemplified by the first successful heart transplant).

But beyond the anecdotes and memories, the diagnostic and therapeutic skills that were reported to us, com- pelled our admiration; but they could not stop us to raise many ethical questions. The subject has also been clearly addressed by Yves Ville:

- Status of patients assigned to the fetus?

- Possible conflict between autonomy of the mother’s body and decision and the interest of the therapy - with a high probability – proposed in the favour of her foetus.

- Imprecise boundaries between experimentation, innovation, therapeutic standard of care.

During the discussion, I allowed myself to make the observation that if we can admit, there may be sometime, a compassionate justification for their implementation, we cannot stop asking if the costs of these interventions, the research they require, the ambitions - even the illusions- they create, are justified and ethically acceptable?

We can indeed, today, prevent to discuss the very difficult issue of cost-benefit expected in the heart of an inevi- table reflection on "the ethical dimension of collective choices in health", I mention here the title, under the Article No. 57, issued by CCNE in March 1998 to which elaboration I had been associated. I would not go further.

You have understood the reason; I chose these beautiful innovations of foetal surgery and the ethical issues, it rises to illustrate the fantastic changes that over the past fifty years have marked our pediatric surgery, itself born of the rapid progress in all areas of medicine and surgery of the children. In the sixties, already they led us to distin- guish, as they said the hard and soft, in the traditional pediatric surgery.

 

I feel, believe me, what it is unusual for me, to have been when I was a child myself, beneficiary, we must say now "consumer" of the medical treatment, then an actor, after being somehow had a pioneer . Departed from the surgery in mid-field because of the cleaver retirement, there are nearly twenty years since I have been involved in what is called Bioethics. I became an attentive observer of the consequences that the fantastic advances in science and technology, quite accelerated in the last few decades, have had on the whole society, which for the first time sees four generations coexisting.

Dear friends, pediatric surgeons,

At the close of the most essential conditions of human society that is procreation, you and your elders have been, the privileged witnesses of these mutations. You are also actors - I was too - by the use, made in good faith, of suc- cessive innovations arising from scientific research and progress of technology.

It's enough to call my own memories to make you have the measure of the changes in our societies, long time called Western; before the globalization disseminates the model.

I am now part of the generation of great-grandparents, the one of the children born “next day” after the First World War. Their childhood was not much different from what had had the children born at the beginning of the century, the twentieth. The family was then the remedy for all sufferings, the place of all the solidarity, children - a reward for the risks and sacrifices.

They have benefited of surgical treatment with limited ambitions, fully explained in the books of Prof. Louis Om- bredanne and of my master Prof. Marcel Fèvre. Do I remind you that it was recommended "the comforter” for the sedation of the baby during the surgical treatment of pyloric stenosis, the acute intussusception had a very heavy mortality, the chance of a few millilitres of blood transfusion for an operated patient in great vital distress, it was qualified, I quote like "humanitarian transfusion”.......?

Very personal reasons led me naturally to become pediatric surgeon; my first small patients are the now-a-days generation of grandparents. Many children born after the second war, baby boom, benefited from better material conditions because of the economic growth which gradually recovered. They were the first beneficiaries of the ad- vances in pediatric surgery, contemporary with the ones from biology, anaesthesia, the neonatal intensive care and radiology. They opened up the completely virgin field of the neonatal surgery.

The combination of our clinical experience, that progressed rapidly and the precious help brought by the pediat- ric radiology, also new, that allowed us to quickly identify the congenital malformations, and for many of them, to evaluate the immediate degree of vital risk (the one which imposed a surgical action). But we were totally unable to estimate the chances of success in the short or medium term. What we knew for sure was that if we did nothing, the child’s survival was irrevocably impossible. It was the example of the first oesophageal atresia.

We should not hide it. The fairness of the information given to the parents, the repeated explanations, if it seemed necessary, inevitably almost led to “do whatever it takes, make all that is necessary”, an expression of shared un- certainty and mutual confidence. It was not castigated the "medical power". Although modest power, moreover, since the success was not always there. But the confidence required sincerity, modesty, truth. The hopes were shared as failures.

I recalled to you what were ‘50th at “Necker - Enfants Malades” Hospital on the occasion of my retirement, at the 47th Congress of our Association September 20th, 1990. I confined myself tonight to remind you that our actions and daring did not arise any ethical questions. Neither the word itself, nor the concept existed then. The newborn was not well. It was necessary to prevent him from dying, even if we knew that the death occurred irrevocably in approximately 50% of cases, due to associated malformations revealed at their turn.

Then gradually and truly, the pediatric surgery was born, requiring us to be both pediatrician and surgeon and sometimes even more pediatrician than surgeon. The technical gesture is not - and from far - the essential for the care of the child, neither the unique answer to the inevitable and long lasting sufferance generated for young parents by having a child not like the others.

You notice that at that time, the relations with our obstetrician colleagues were practically nonexistent. Information on the timing of the evacuation of meconium and its characters did not appear in any records of newborns, which were transferred to us for neonatal functional occlusion; this elementary data, however, difficult to recover, but very necessary in these situations when we would eventually recognized it as the early manifestation of Hirschsprung's disease.

Soon the events began to accelerate

The baby-boom generation, our first operated patients, were also the young adults at the events of May 1968. The slogans of all releases begin with "Make love not war!” established the sexual liberation that has actually allowed the chemical contraception, recently available.

This opened the new period, of "child if I want", through which women began to acquire a totally new place in society, with its legitimate ambitions but with its limitations also.

- A child? This is not the time.

The first generation of "When I want!”

In this spirit of a responsible control of reproduction now possible by various methods of contraception, was developed by Michel Poniatowski, Minister of Health, the law that would amend the one from 1921 - I had the honour to be his medical councillor. The review of the Act by the Parliament was delayed by the death of President G. Pompidou. It was courageously defended in Parliament in 1975 by Madam Simone Veil, which gave him her name. The Act of January 17, 1975 reaffirmed the absolute respect for the life.

Put in place a policy of education to voluntary contraception, formalized the family planning, recognizing that very special circumstances, strictly defined and framed, a woman could lead to the choice of voluntary interruption of pregnancy; abortion was decriminalized which was previously severely repressed since 1921.

Almost at the same time opened, with the great technological and clinical revolution of the ultrasound imaging, the possibilities, scarcely imaginable, of a pre-natal diagnosis.

With it appeared for the pediatric surgeon what was still called the problems of consciousness.

Our sonographer friends discovered, with surprise and almost greedily the images revealing the malformations that we know well. At that time, we tried to correct and limit the consequences, without knowing the limits of our possibilities. But we also knew with what passion for life, the children overcame their disabilities and with what courage their parents bravely coped with adversity in order to help them.

Some time, the power of the image triumphed too often over the knowledge, experience and wisdom of pediatric surgeons. It happened to me several times to be interviewed on the reason of a suggestion of abortion due to the identification of a malformation which I was certain it was unlikely to be lethal, and yet I knew examples of such experiences with disability accepted and overcome.

I remember, as if I had received yesterday - it was thirty years ago, the memory of a mother entering my outpatient clinic office, with a tall and beautiful girl of fifteen years old, operated on in childhood by Prof Fèvre for a simple cleft palate. I did not discern what she was expected of me and felt unwell. Observing the quality of the result both anatomical and functional, I was ready to promise to convey to the patron the good news and her thanks. Then, in a violent outburst the mother exclaimed: "You could not see it on ultrasound?" At the moment I saw in the girl's eyes the fear, the distress of a child that her mother had quite rejected.

This period was long and difficult. It did find a happy homogeneous solution, regulatory on July 29th, 1994 by the said Act of Bioethics which formalized Multidisciplinary Centres of PND (prenatal diagnosis), as “Multidisciplinary decisional structure of regional ministerial approval”. If my sources are correct, then they are now 48 in number in which pediatric surgeons, can report their experiences and give their opinion.

Along with "the revolution in imaging", was also born, one of molecular biology and with it, the extraordinary development of genetics initiated by Jérôme Lejeune in 1958, when by cutting with his scissors the photographic images of chromosomes, he identified the trisomy 21 at the origin of the Down syndrome soon followed by that of trisomy 13, then 18.

We were going to recall into question some of our indications for surgery. During a brief meeting at Children Hospital of Philadelphia, devoted to this subject, which I attended, I learned from my friend Everett Koop that our American colleagues were facing the same uncertainties. I brought back their last novelty implemented systemati- cally, with parental consent for the newborns with a large omphalocele: to use plastic films which were recently utilised in the food industry. Incredible news! Wisdom? Questionable audacity? Like a chicken protected in a supermarket stand, the baby's abdomen should be completely wrapped in the film that would protect it from exter- nal contamination and prevent it from drying out. We could have three or four days to practice the karyotyping. We understood that the associated genetic abnormalities were the cause of global mortality rate of 50%; observed previously. If it revealed the severe chromosomal abnormality, which we knew it was irrevocably lethal in a few days, the baby would not have been operated. Otherwise, the patient was operated on, well equilibrated, without increased risk and had all the chance to heal.

We had no idea even then that so quickly, early prenatal diagnosis of an anomaly could be completed by the identification of its genetic origin. Especially, when we hold the interest of PND (prenatal diagnosis) to confirm the absence of an anomaly and to reassure the parents already tested previously and also to prepare ourselves to take better care of the newborn and the optimization of the conditions of his treatment.

However, media broadcast of the new opportunities would drive not only to know the sex of the baby, also as- sured of its quality or informed of his abnormality. It was inevitable that "the child if I want whenever I want” be added soon "as I want, free of any anomaly". The use of medical termination of pregnancy was not stipulated under the Act?

Almost simultaneously, in this very short period which followed the fantastic scientific advances in the field of birth, came the revolution of “in vitro” fertilization. The birth of the first test tube baby Louise, obtained in Great Britain by Robert G. Edwards in 1978, ceased to be a remarkable achievement, when Elizabeth was born in 1981 in the U.S., last but not least, for us when Amandine was born at Antoine Beclere Hospital at Clamart, February 24, 1982, after the combined efforts of teams of biologist J. Testart and of our gynaecologist colleague, Rene Fryd- mann.

This event aroused intense interest followed by a reflection of concern not only in the society but also from the scientific community itself. On February 23rd 1983, after the National Conference of Research, President of the Republic, François Mitterrand, created by decree, the first National Consultative Committee on Ethics (NCCE) for Sciences of Life and Health. I quote: "The committee's mission is to give its opinion on moral issues that are raised by research in the fields of biology, medicine and health, these problems relate to man, social groups or the entire society. "

The questions posed by the Medically Assisted Procreation and experiments on man were among the first top- ics discussed. Reflection of NCCE spread quickly to other topics, such as research on human embryos, access to genetic information, or the notion of consent. It was developed simultaneously in the new Europe, the predominant notion of the autonomy of the person.

You know - but this is not my purpose here to develop this subject - what major changes resulted in the doctor- patient relationship: Decree of the Court of Cassation in February 1997 – Decree Hédreul more commonly referred as Sargos decree, after its author - which made the medical act as contractual service under common law, the law of March 2002 on patients' rights.

Thus, over the years, some have created the fantasy of the perfect right to the child, and more, right now, the child to become immune from the disease. Genetic tests now offered on Internet, improperly and dangerously exploit this illusion of a predictive genetics.

Precautionary principle, zero risk, safe society, claims for damages would lead to unfortunate medicine liable for prosecution. Any error of PND (prenatal diagnosis) has become unforgivable.

Everyone remembers the cases of complaints to court for "deprivation of the right to abortion" and claims of compensation. The Perruche record in this regard was, one of the clearest illustrations of this tendency. Beyond the decision of November 17th of the Court of Cassation, it was needed an addition to the Act from January 2002 to make the statement that "no one can not claim injury from being born."

None of you probably had been indifferent to the reaction of insurance companies in this case and the conse- quences that had ensued over the practice of our sonographer and gynaecologist colleagues in private. Also the ones, working in hospitals were not spared. Remember the lawsuits brought in 2004 by parents against the team of «Necker - Enfants Malades» Hospital in the context of a prenatal diagnosis of diaphragmatic hernia.

Today's parents, many of you, your generation - the third generation of our society have known only this new landscape. They are the beneficiaries of such extraordinary technical possibilities - even if some would be rather demanding consumers. Do not they sometimes unwisely invite the unrestrained expression of a scientism that is everything which is available must be done? This reflects the predominance of the autonomy of the person on the demands of society especially in the economic field.

I refer here, more still ongoing debates about surrogate mothers, the pregnancy for others particularly strong on the eve of the revision of the bioethics law of 2004. They illustrate the claim, expressed as a right, to the satisfac- tion of desire for children, in all circumstances, in all situations, despite all the impossibilities. The right to the child rather than the rights of the child is an unfortunate manipulation of the child, say the philosophers; without doubt.

I confine myself to recognize and emphasize the profound "societal" changes - as they say today, which had ac- companied, if not caused, the successive innovations that I have tracked you. Without doubt they are not foreign to the new features that characterize today's "young generation - the fourth", the one of today's children.

To excess, simplifying this subject studied by the specialists, sociologists, psychologists, educators: The spoiled child, new forms of family, loss of educational benchmarks and the abuse of the child are among the topics dis- cussed today.

I can not ignore the consequences which had in the scientific development of pediatric surgery itself, the one which gathers you so numerous in Angers today.

The abnormality no longer needs for a single response, the technique or a surgical approach. It requires a multi- disciplinary management. As soon as it was detected, the entire team works to identify the origin, mechanisms of its occurrence and its evolution. With enthusiasm, it shares the hope to achieve prevention or repair of molecular disorders which are the cause of the anomaly in the initial stages of embryonic development. The full integration of pediatric surgery units in structure "Mother and Child" the need for this comprehensive approach. I have no doubt that you watch, that the pediatric surgeon isn’t reduced to a position of hyper-specialized technician, appreciated only by his total mastery of new high technology. One should also be aware to ensure that these are not gradu- ally confided to others who have the exclusivity of the practice of certain gestures which fall within the pediatric surgery.

 

Finally, I make a confession and add a thought.

Confession - In the speech, which concluded my term as President of the Academy of Surgery in 1994 – fifteen years ago - I revealed a problem of conscience. I read my text: "In doing so, we are indifferent to witnessing the im- mense growth of the gap between the level of health and the system of medical care for our industrialized countries and the rest of the world. At home, in the near future, pediatric surgery will become a "luxury" surgery for privileged children; survivors of pre-natal diagnosis or a selected product of pre-implantation diagnosis, as soon as will be raised the recent reserves, the final burst of legislator .

And I added: "We must not forget that 75% of the world's population belongs to the Third World. The children under fifteen years of age represent 75% of the population. And further: "Even if it remains place for humanitarian action, reduced to essential gestures, yet we will know the practice and who will teach them, us?”. It seems that nothing has really changed. My question remains.

My final thought:

In a comprehensive study, which was conducted by the Academy of Medicine on the outcome of pregnancy for others, it has been reported that if some scientists believe, who are not concerned by the ethical questions, we can expect that artificially conceived embryos in vitro, strictly selected, can complete their development up to au- tonomy, soon by controlling the nutritional conditions necessary for their development before being handed at the right price, to the one who ordered, "the consumer".

They discussed of the artificial uterus. The term is deliberately chosen by media. It is not, of course, a uterus, within the meaning of the word. Indeed a very recent communication from the rostrum of the academy during a meeting on the feto-placental barrier, was clearly pointing out that the uterus is not necessary for gestation and foetal development – what, long time ago, the ectopic pregnancies had taught the surgeons. The uterus would be then necessary only to control the birth. Thus, it was reported that the woman could be, one day soon, released by its specificity and the heavy task imposed on by the constraints of gestation.

What happens then with the continuity of the human species? Chaos! This should be balanced out spontaneously, say the optimists.

This is what we were told by the proselytes of the virtual economy, before breaking out the bubble that plunges the global economy in the regression with its procession of suffering individuals about which one cannot even imagine the magnitude and duration.

Already had lately been recognized and proven the threat, “ecological bubble" born from the alteration of the natural balance from the development of industrialization goal but also from the indifference of everyday people of our time, especially in urban concentrations thus became threatening deterioration of the planet, the global warm- ing by the greenhouse effect, which weighs on its balances. Their consequences can be dramatic.

Would it not be necessary, before triggering a third bubble, to put an end to the excesses which help us to bring closer to the term? They already exceed largely; the fantasies generated in its time, "the reproductive cloning". We are already in order in the fictional threat of "virtual parenting and its derivatives”. The vitrification of oocytes make them suitable now to the market for conservation, as there already are, from long time, the sperm (which France, many years ago, put under the control of CECOS - Centres of Studies and Preservation of Eggs and Sperm). Will we have the means to oppose their selling on the Internet that already offers "uterus rental" and will propose tomorrow kits of artificial nutrition of embryos?

Doesn’t come the time to appeal for a kind of ecology of human society, a return to natural patterns of parentage and family structures that ensured the continuity and progress of mankind since appeared on Earth?

Isn’t it time we creat a sort of “preservation of mankind” and appeal for the return to natural filiation and traditional family structures which have enabled Man to survive since he first appeared on the Earth?

 

*TRANSLATION: CHRISTIANE FRADIN

 

 

REFRENCES

1. Brunelle F, Sonigo P, Boddaert N, Benachi A, Dumez Y. Contribution of MRI and CT in fetal diagnosis of fetal malformations Bull. Acad. Natl Med.,2008 ; 192( 8) : 1559-1574.

2. Solomon l J, City Y. To-twin transfusion syndrome: physiology, di- agnosis and surgical treatment. Bull. Acad. Natl Med 2008 ; 192(8) :1575-1587

3. Gucciardo l, Deprest J A, Vaast P, Coll. Antenatal prediction of pul- monary hypoplasia in utero treatment by fetal tracheal occlusion and en- doscopic (FETO) in isolated congenital diaphragmatic hernia severe. Bull Acad Natl Med 2008 ; 192(8) : 1589-1609.

4. Ville Y. Recent developments in fetal surgery. Technical, organizational and ethical. Bull Acad Natl Med 2008 ;192 (8) : 1611-1624.