THE OBJECTIVES OF THE ASSOCIATION

Transplantation is sometimes the only way to save the life of a child suffering from irreversible liver damage.

The Children’s Hospital of Geneva is the Swiss reference center for liver transplants in children. As such, all pediatric liver transplants and follow-ups are performed here in Switzerland. A liver transplant is sometimes the only way to save the life of a child suffering from irreversible liver damage. This represents about 8 to 12 liver transplants per year in children and about 400 outpatient consultations. The actuarial survival rate is 91.2%. A very committed and advanced medical and nursing team! Liver transplants require numerous consultations beforehand and often an emergency intervention depending on the availability of a graft (living donor or cadaver). The post-transplant follow-up is done over a period of several years.

The Children’s Hospital of Geneva is the Swiss reference center for liver transplants in children. As such, all pediatric liver transplants and follow-ups are performed here in Switzerland. A liver transplant is sometimes the only way to save the life of a child suffering from irreversible liver damage. This represents about 8 to 12 liver transplants per year in children and about 400 outpatient consultations. The actuarial survival rate is 91.2%. A very committed and advanced medical and nursing team! Liver transplants require numerous consultations beforehand and often an emergency intervention depending on the availability of a graft (living donor or cadaver). The post-transplant follow-up is done over a period of several years.

 

The Action of the APAEG

In the majority of liver transplants, the parents accompany their child who is generally less than 1 year old for: consultations before and after the hospitalization, during the hospitalization (1 to 3 months). Coming from all over Switzerland, these families are confronted with a major change in their lives and find themselves far from their usual environment, their work and their family.

In order to support these families, APAEG provides them with comfortable apartments so that the parents, and sometimes the brothers and sisters, can stay close to their hospitalized child. Relieving families of logistical difficulties is a real accompaniment and support that APAEG offers. The apartments made available by APAEG near the hospital are a real source of comfort for families who are going through important emotional and structural stress related to a vital intervention for the survival of their child.

A small fee is charged to the families, the rest of the equipment and rent are financed solely by private donations. It should be noted that accommodation costs are not reimbursed by insurance companies and remain the responsibility of the parents, who are sometimes in difficult economic situations, hence the need to offer affordable solutions.

 

Impact on patients and relatives

Children are not small adults, they have specific needs. A hospital stay can be frightening and very destabilizing. The presence of the family allows the child to live his hospitalization in a more serene way, which directly influences his recovery.

The apartments made available to the families allow for a significant improvement in the support of the children without social or economic reasons discriminating between patients. This also allows the very young child not to lose contact with his family environment. It is important that the child is taken care of as a whole. These daily reference points are fundamental for his emotional development.

In 2020 (before Covid), 714 nights were offered, i.e. 81 families of children with liver transplants or liver disease who were able to be accommodated.

In order to facilitate visibility and access to these apartments, a website and a reservation platform have been put online. These tools allow a greater reactivity and efficiency of the reservations.

 

Support us

We would like to draw your attention to the fact that the management of the apartments has no link with the hospital. Their existence and operation are entirely taken care of by the Association for the Help of the Transplanted Child and his Family, a non-profit association, financed solely by donations. Donations can be made to the Postfinance APAEG – IBAN : CH84 090000001763 1233 3. Thank you for spreading the word.

 

The History of APAEG

Founded by Professor Claude Le Coultre, the Swiss Child Liver Center CSFE of the University Hospitals of Geneva, currently directed by Professors Barbara Wildhaber and Valérie McLin, has been the reference center in Switzerland as well as internationally for the treatment of children with liver disease for almost 30 years. To date, nearly 300 families have been treated there.

1992: Creation of the Pediatric Liver Transplant Center

Such therapies always entail long periods of hospitalization for the operated children, before, during and especially after the transplant. During these periods, it is obviously essential that the operated child can maintain a close emotional contact with his family and benefit from the presence of his family or at least one of its members. This implied the necessity, for the parents of children living outside the Geneva area and coming from all over Switzerland, sometimes of modest condition, to find an adequate and economic accommodation near the pediatric hospital. As a first step, Professor LeCoultre obtained from the management of the HUG two studios in an apartment building near the hospital.

Creation of the APAEG (first period)

As the question of organizing the stewardship of these two studios arose, Claude LeCoultre then asked Georgette and Eric Genton and, in order to ensure the financing of this operation, it was decided, in 1992, to found the APAEG (Association pour l’Aide à l’Enfant Greffé et à sa famille), with Claude LeCoultre as President, Eric Genton as Treasurer and Georgette Genton as Secretary. Since then, the accommodation of families of children with liver transplants was provided, although still precarious, Georgette and Eric Genton became the linchpins of the activity of the APAEG. In this first period of about five years, the exploitation of these two studios allowed to offer parents of sick children 2’100 nights at the modest rate of 15 CHF per day. Since 1994, the coordination of the occupation of the apartments, their maintenance, the reception of the families and their orientation was ensured by Georgette Genton, as well as her accounting. The administration and the representation of the APAEG, as well as the fundraising efforts were the responsibility of Eric Genton, all tasks carried out on a voluntary basis.

The expansion: 1998

During this period, surgical techniques and treatments having been greatly improved, a growing number of children from all over Switzerland converged on Geneva to be treated and transplanted, their parents using the two studios for an increasing number of nights, forcing the association to realize that its accommodation resources were becoming insufficient both quantitatively and qualitatively. Indeed, the existing studios were too small to accommodate, especially during weekends, the rest of the family wishing to join the family member who remained at the bedside of the hospitalized child in Geneva. Thus, at the end of 1998, based on this observation, our Committee decided to significantly develop its activity by renting other larger accommodations, always in the immediate vicinity of the hospital, and, at the same time, by professionalizing the quality of its service of supervision and reception of the families. Thus, in 1998, thanks to the professional activity of Eric Genton, director of a Geneva real estate company, APAEG was able to rent four apartments, one on the rue de Carouge, the three others on the rue Blanche, in the immediate vicinity of the children’s hospital. In addition, the time available to the hospital staff to manage the accompaniment of the families was constantly decreasing, so it was decided to create, as of March 1st 1999, a part-time position of coordinator, to manage all aspects of the activity of making the apartments available.

The renewal

Logically, it was Georgette Genton who accepted to occupy this position, as Secretary of the Committee and coordinator. Her field of activity covered in particular all the details of management of the APAEG apartments, from their fitting out to their maintenance, reception and orientation of the families, invoicing and accounting, in collaboration with the caretakers of the surgical service, Eric Genton remaining treasurer and vice-president with unchanged tasks, but always voluntary. All these activities required above all an exemplary availability because, the transplants being most often not plannable in advance, they were called to intervene to welcome a family, sometimes late in the evening, on Sundays or even on a Christmas Eve. In 2004, APAEG managed to rent a fourth apartment, still on the Rue Blanche. The real estate stock of APAEG has not changed since then. This has allowed APAEG to offer, from 1995 to 2019, more than 18’000 overnight stays to parents of sick children. Since its foundation, all the activities of APAEG have been financed by donations from foundations, organizations or private individuals, of an extraordinary generosity and fidelity to which it is appropriate, once again, to pay tribute here. In 2019 Mr. and Mrs. Genton wished to hand over the responsibility of the presidency and treasury while remaining an active member of the association. Mr. Pierre Dominique Gerdil took over the presidency, deputized by Mr. Sylvain Georges to the vice-presidency and treasury, helped by employees highly motivated to provide the essential humanity to the care of these children and their families. This new team perpetuates the search for private funds which are essential for the continuity of this activity.