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Yannick Jouenne is the Director of Communication and Events at the association Les Liens du Cœur in Gironde, created by caregivers from the congenital heart disease service at CHU de Bordeaux in 1994, with the mission to help and support children born with a heart defect undergoing surgery, as well as their parents and families.
During the summer break, the teams at impact.info invite you to (re)listen to one of our episodes published this year.
This episode highlights the testimony of Yannick Jouenne , Director of Communication and Events at the association Les Liens du Cœur .
Enjoy listening!
Frequently asked questions What is a congenital heart defect and how does it affect children and their families? A congenital heart defect is a heart malformation present at birth. It may require complex surgical interventions, leading to prolonged hospitalizations for children and significant stress for their families, who often have to travel long distances to receive specialized care.
Why is it important to support families during a child's hospitalization? What types of services does the association Les Liens du Cœur offer to families? How does the association Les Liens du Cœur integrate into the healthcare system? What are the association's future projects to improve support for families? Florence Jaillet
impact.info journalist
Published on 4 August 2025
Transcript Audio in Français — text automatically translated· AI-generated transcript
0:00 Hello and welcome to the podcast for those who want to make a difference 0:10 within their company. 0:11 Empowering the families of hospitalized children is the mission set by 0:16 the caregivers at the Olévec hospital in Pessac near Bordeaux, Yannick Jouen. 0:22 My name is Yannick Jouen, I was born in June 1969 in Sainte-Adresse near Le Havre 0:29 and I have been the director of communication 0:35 and events at the association Les Liens du Cœur for eight years now. 0:37 Les Liens du Cœur, to introduce this association, what is it, what 0:40 are its missions? 0:41 Les Liens du Cœur is a rather unique association as it was 0:45 created by the caregivers of the congenital heart disease department at the CHU de Bordeaux, so congenital heart disease 0:50 is a heart malformation. 0:52 In 1994, it's not a brand new association, but it has gained a lot of prominence 0:58 over the last eight to nine years and the mission of the association, in fact, 1:03 is to help and support children born with a heart malformation 1:08 who come to the CHU de Bordeaux for surgery, and so the association will 1:12 support them, but will also support the parents a lot, and I would say the family in a broad 1:17 sense since we will also take care of siblings to ensure that 1:20 the parents can fully focus on their child's health and that the association 1:25 can relieve them of all the issues they may encounter. 1:29 Indeed, these support missions address very concrete problems 1:33 faced by families? 1:35 Yes, indeed, it is extremely concrete because we will make sure to address 1:38 all the issues that can be related to housing, for 1:42 example, since we have families today who come from 400, 500, 600 kilometers 1:45 and sometimes even further to have their child operated on, transport issues. 1:48 Today, families are accommodated when the child is hospitalized in Pessac, 1:49 they are housed in welcome houses but those are in Bordeaux, at the children's hospital 1:53 since there is no nearby accommodation in Pessac. 1:55 So, we have set up a shuttle that, every day, from Monday to Sunday, from January 1st 1:58 to December 31st, will pick up families from the welcome houses and take them 2:03 to Pessac and in the evening will bring them back to the welcome houses. 2:07 And then, there are also work-related issues, we have families who cannot 2:09 stop working, we will offer them solutions, for example, co-working. 2:13 Then, there are the issues of looking after siblings, the association 2:16 can take care of siblings when they come to the hospital. 2:20 The idea is really for parents to fully focus on the health 2:23 of the sick child and for us to relieve them as much as possible of all these questions that are 2:28 also important but for which they may not have the resources at the hospital. 2:32 2:37 to be able to answer that. 2:38 There are also wellness workshops, who are they for and what can be 2:42 done in these workshops? 2:44 We have indeed set up what we call wellness workshops and the idea of these 2:48 workshops is to offer parents a break, bubbles of well-being so they can 2:52 release tension, relieve stress, give themselves a little hour, half an 2:57 hour actually of a break and we will have Reiki, Hamas, osteopathy, 3:03 cardio boxing, Pilates, yoga and all these workshops are open both to children 3:08 when they are older, to parents but also to caregivers because 3:11 taking care of caregivers and healing caregivers is also part of the mission 3:15 of the association and that is extremely important to recharge the batteries because 3:19 when you are in the hospital and you will stay for long weeks, long months 3:22 in the hospital, you need to be strong, having these workshops helps to stay 3:26 strong by releasing all the stress you may feel during your child's hospitalization. 3:30 It can last for a while, what is the approximate duration? 3:31 Yes, so actually to repair the heart, because we repair the heart when we have 3:34 a congenital heart defect, there are two techniques, either we will do what we call 3:37 catheterization and this is for congenital heart defects that are the least complex 3:40 and the least severe and in these cases, the family will stay for a week, ten days 3:45 with us. 3:48 Unfortunately, there are many congenital heart defects that are much more complex 3:49 and will require one or more open-heart surgeries and there, of course, families 3:53 will stay several weeks, even several months with us and in France, there are four 3:58 major reference centers for congenital heart defects, very complex ones. 4:04 The other three besides Bordeaux are Pompidou, Necker and Lanelong, these three 4:07 centers are in Paris. 4:13 So the only European reference center for very complex congenital heart defects 4:14 is Bordeaux, it's Olévec, which means that indeed, we welcome children who come 4:18 sometimes from very far away, including from abroad with cardiac surgery sponsorship, 4:22 we also have in the service children who have congenital heart defects 4:26 and who require a heart transplant and so there, of course, the family will stay 4:32 even longer with us, we welcome children from all over the large 4:35 Nouvelle-Aquitaine region, but for certain pathologies, for certain congenital heart defects, 4:39 children can indeed come from further away. 4:43 You were talking about projects, what is planned, what will you be able to do soon? 4:46 The big project of the association that we have been working on for ten years now is 4:49 to address the lack of housing, local accommodation in Bessac. 4:54 Today families when they come, either they are housed in welcome houses, or they will take an Airbnb or a hotel, when you take an Airbnb at a hotel, it can be quite expensive. 4:58 5:01 5:06 Staying in a hotel for several months is inevitably expensive, unfortunately. 5:09 We still have families who are forced to sleep in their cars in the hospital parking lot. 5:13 So obviously for us, for the caregivers, it's just unimaginable and it's 5:14 impossible to let this situation continue. 5:18 So the association will build, with the help of the CHU de Bordeaux, a large 5:20 house, the house of patients and families right on the hospital site, that is to say, 5:25 five minutes from the cardiology building, in the heart of the hospital, thanks to a piece of land 5:29 that the CHU has made available to the association. 5:33 We will build this house of Les Liens du Cœur, which should be completed by 5:35 2027, and it's not just a housing facility, it's really a living space that we will 5:40 create. 5:45 The idea is to offer them a living space where they feel a bit like the image 5:46 of the association, as comfortable as possible. 5:50 In this house, there will obviously be rooms, including family rooms 5:52 to accommodate siblings, but there will also be coworking spaces, a large gym 5:55 to allow children to resume sports activities 5:59 after surgery with our health sports program called Muscle ton 6:03 cœur. 6:06 We will have a wellness area, obviously a library, a playroom, an outdoor garden, 6:07 a large communal kitchen so families can cook together. 6:12 So the idea is really to create a living space where families feel as 6:16 comfortable as possible and can be housed close to their 6:19 hospitalized children. 6:23 In your opinion, how do the missions, the future missions, the projects of the association Les 6:24 Liens du Cœur change things? 6:29 First of all, I believe that the very DNA of the association makes a difference. 6:32 I think that if today we ask the caregivers in the department if the department would be 6:37 the same without the association, they would all answer no. 6:41 So I think the association has brought what we summarize as connection in care. 6:43 Today, the actions of the association are extremely important for the department, 6:48 for the caregivers, and obviously also for the children. 6:49 It changes things because it highlights the fact that care is extremely 6:52 important and remains the priority, of course, but that alongside care we must also provide 6:54 a lot of other things, and the better we support families during hospitalization, 6:58 the stronger they will be and the more prepared they will be for what they 7:03 will experience in the heart of the department. 7:08 So we are changing things in the sense that families also realize how 7:12 important it is to be supported; they become aware of it. 7:13 7:18 7:21 when they are there, but they also realize it when they go back home with 7:24 them. 7:25 Being supported throughout the entire hospitalization allows 7:28 them to be even stronger when they find themselves at home alone with a child who has a 7:32 scar in the middle of their chest, whom they will have to take care of, massage, etc. 7:36 If we have been well supported, we will be a little stronger. 7:39 So it shifts the lines in all those ways, and in fact the connection between 7:43 the caregivers, the association, and the parents is extremely strong. 7:45 We often say that we are a big family in the service, you have to come see 7:50 actually, you have to immerse yourself in this service to see how everything 7:53 comes together quite naturally, because the association is really 7:57 at the heart of the service, but as I said earlier, care remains the priority 8:01 and so the association must intervene without hindering the care, but it must be 8:05 there and the doctors, the caregivers make room for the association and that allows 8:09 for a different vision of care, a more complete vision of care with 8:13 support, with psychological care, with well-being support, and I think that if other services could have an integrated association, 8:18 I think they would be very happy to have it. 8:24 Yannick Jouenne, you are, I remind you, the director of communication and events 8:32 within the association Les Liens du Cœur, it's in Gironde, 16 years old is the age 8:36 to start your own business in France, at 16, how do you envision the future, 8:41 do you see yourself being part of a big family like this? 8:46 So, at 16, I aspired to one thing, it was to live in the moment, 8:50 but it's also a bit of the philosophy we can have at Les Liens du Cœur, and then I aspired, 8:57 but that was deeper, indeed to do something useful, 9:01 that was a certainty, I wanted to have a job that would be useful, 9:05 that would help others, that had been deep inside me for a long time 9:10 and indeed since I was 16, I took a few detours to 9:13 do it since I arrived at the heart of the association 9 years ago, and when I 9:17 arrived, before getting there I had never heard of congenital heart defects, 9:21 even though it affects one in 100 children in France, and it's among the most common 9:26 malformations, however, I had wanted to work in an association for 5-6 years, that was really my goal, and the meeting happened like many 9:30 by chance, the chance of a meeting, a crush, no pun intended, 9:35 with this association, and the desire to bring my expertise and make a difference, 9:39 I think I found my path, at least the one I wanted deep down for a long 9:44 time, which is to be useful on my scale, because it's a big family, 9:50 it's a big chain, and the association is a small stone in this whole structure, 9:55 but every small stone makes a difference, that's what I dreamed of when I was 9:59 16, and today I'm happy to participate at my level, to contribute, 10:03 10:07 10:12 to make the hospitalization of children and parents a bit more comfortable. 10:16 Thank you to Yannick Jouenne, director of communication and events at 10:20 the association Les Liens du Cœur in Gironde, you can find this podcast on our site 10:26 impact.info. 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