Family Story: at 3 months old, our baby was in intensive care for several weeks with bronchiolitis.

When Corinne and Hassan explained what had happened to their youngest daughter, it was obvious to us that we would share their story in the hope that it would be read by as many people as possible. At 3 months old, Layssa was rushed to hospital with severe bronchiolitis. She recovered after 10 days of intensive care before relapsing following a complication that prolonged her hospital stay by 3 months. 6 operations later, Layssa is out of the woods and back home at last. During these long months spent in various hospital wards, Corinne and Hassan had time to observe and discuss with the nursing staff. A few months later, they decided to create the A côté de toi association to support parents and improve the quality of life of sick children in the pediatric intensive care unit at the HUG. Their story is a true example of strength, courage and resilience, and we're going to do everything we can to get it read and shared. To support Corinne, Hassan and all the parents who are currently going through this ordeal, we're counting on you to publish this interview on your social networks and support the association and its many fantastic actions.

Hassan family, Corinne, Layssa and Aya

Can you introduce yourself in a few words?
My name is Corinne, I'm 36 years old, and I'm co-founder of the association À côté de toi and I'm involved in several professional projects with my husband.

My name is Hassan, I'm 34 years old, I'm also co-founder of the association À côté de toi and I'm a lawyer at PBM Avocats.

We've been a couple for almost 12 years and married for almost 6. We are the parents of 2 little rays of sunshine, Layssa aged 2 and Aya aged 5.

Your family is expanding in 2019 with the arrival of Layssa. How is the birth and meeting with her big sister going?
The birth is going very well. Aya was very excited to meet her little sister. We remember that from the very first days, she was very protective of her. Few people were allowed to touch her, which was very touching for us.

One morning, when Layssa is just 3 months old, you're worried because she's having trouble breathing. You decide to take her to hospital. How are you cared for and what do the doctors tell you?
The images that come back to us are blurred and intense at the same time. So, on November 28, 2019, after having her pediatrician's assistant listen to Layssa's breathing over the phone, I (Corinne) contact my mother-in-law so that she can take us urgently to the pediatric intensive care unit at the HUG, Hassan being in a meeting. When we arrived at the ER, we were seated in a room. The doctors and nurses begin to parade before my eyes. I try to calm and reassure Layssa.

A few minutes later, we're moved to another room. I sense that this is serious and that Hassan must come right away. The room seems huge, Layssa is crying. It's so crowded. I'm frightened. I look around to see what's going on. Hassan arrives. The assistant doctor explains the situation. I can see the fear in his eyes. The assistant doctor and the whole team are exceptional. Despite the situation, they remain calm and try to reassure us.

We are told to go upstairs to the pediatric intensive care unit. Once there, Layssa is taken care of immediately. The head of the clinic tells us that they will try to give her oxygen and that she hopes to avoid intubation. We are stunned and lost. She is finally intubated shortly after admission.

Layssa suffers from severe bronchiolitis and even pneumonia.

After several days in hospital, you think you're out of the woods, but things quickly go from bad to worse. Why?
On December 24, 2019, Layssa is finally transferred to pediatrics after 2 weeks of intubation and 4 in intensive care. We don't dare believe that she's finally cured of her bronchiolitis and subglottic stenosis due to intubations. Unfortunately, we sense that something is wrong. She's having trouble taking her bottle. We have a bad feeling about this. On January 2, 2020, we call a meeting of the ENT team and the doctors.

We explain that this situation can't go on any longer and that the Professor must come as soon as possible. The Professor is not present, as he is on vacation. At first, they tell us that we'll have to wait until Monday, January 6, 2020. I (Corinne) tell them that I don't accept this answer and that they must call him immediately, otherwise I'm off to join him with my daughter. I remember feeling an enormous need to protect Layssa.

Finally, on Saturday January 3, 2020, Layssa returned to the operating room for the 3rd time in 5 weeks. The medical team noted the return of the stenosis, this time healed, necessitating her immediate transfer to the CHUV, where one of the world's most specialized teams would operate on her on January 6, 2020, using a technique developed at the CHUV and recognized worldwide.

Arriving at the CHUV, Layssa is immediately taken into intensive care, again. The medical team tells us that her case is very critical and that we must prepare for a long hospital stay. Her recovery could take several months or even years. We are shocked.

In reality, how long and how many operations will it take before Layssa is out of the woods?
Around 3 months and 6 trips to the operating room, all under general anaesthetic.

Will she later suffer any sequelae of this illness?
It's important to note that Layssa was cured of her bronchiolitis around 10 days after her admission to intensive care. The complication that prolonged her hospital stay was subglottic stenosis following trauma related to intubation. Layssa won't have any after-effects later on, but we've heard some doctors say that we'll have to wait until she's 3 years old, others until she's finished growing, or even when she'll be able to run a marathon, to be sure.

Is bronchiolitis a serious childhood illness? How can it be avoided?
Bronchiolitis is an illness that can go very wrong between 0 and 3 months. There are a few things you can do to limit the risk of contamination, such as wearing a mask when caring for an infant with a cold, or regularly cleaning the infant's nose when suffering from rhinopharyngitis.

Layssa was unfortunately unlucky. The flu can also take a terrible toll on a child. It's true that it's a well-known illness, but for some reason there's no prevention campaign, whether on the part of the health department, maternity wards or pediatricians.

Do you receive emotional support during your stay? Are you offered a visit from a psychologist?
During Layssa's hospitalization, we saw a psychologist in intensive care with whom we had little affinity, and another in pediatrics with whom Hassan had a good exchange. The support we received from the nurses was remarkable. We'll never forget the faces and names of the people who were there for us. I always say that they were our 2nd family during this period. Many thanks to them for their support.

From an organizational and logistical point of view, how did you manage?
A radical reorganization of family life was an immediate necessity, particularly concerning work and the care of our eldest child. We set up a schedule and a rotation system to take care of both Layssa and Aya. We did our best not to disturb Aya and change her habits. We took it in turns to have dinner with her, tell her bedtime stories or take her to school.

Working for Hassan's family's company at the time, we were lucky enough to be able to arrange our working hours, which is not the case for most parents. We met parents who, in addition to being at their child's bedside, feared the dramatic consequences on their work.

It is important to note that since July 1, 2021, parents can benefit from up to 14 weeks of paid leave in the event of their child's hospitalization.

How did your 3-year-old daughter Aya cope with the situation? How did you explain what was happening to her little sister?
From the outset, we explained the situation to her in children's terms. She also came to see her sister in intensive care under the guidance of the nurses, so that she could visualize where Layssa was, rather than imagining it. There were ups and downs, of course. We're well aware that she must have felt our fears and anxieties. In spite of everything, she also had some wonderful memories, like our trip to Lausanne to see her sister. Her first train journey!

What was the most difficult thing for you during this period?
This period was a real emotional rollercoaster. We went through moments of relief and hope, but also of uncertainty and fear of death. Our whole physical and psychic bodies took quite a beating.

What advice or message would you like to give to parents/families whose child is currently in intensive care?
It's vital to remain hopeful and have faith in life, even when you're losing your footing. You have to fight for your child and never give up. Above all, we must not forget to give ourselves time, a break that would do us good, so that we can come back even stronger to our child's bedside. We have the right to fall so that we can rise even higher. I'd like to say to all parents that no matter how much we do for our children, we can't control everything, even if it's hard to accept.

How are Layssa and Aya today? What's their relationship like?
Aya and Layssa are doing very well today. We were very worried that Layssa would be affected by her story, but in the end she remains a warrior and lives life to the full. As for Aya, we've been through a rather complicated period. She experienced her sister's illness as an abandonment on our part. Fortunately, we've learned to communicate a lot and to put emotions into words.

Today, they get along just fine. Aya always tends to protect and look after her sister, while Layssa gives her a run for her money.

Following this painful experience, you decided to set up À côté de toi , an association to support parents and intensive care teams at the HUG. What is your mission? What are your actions?
During our long stay in intensive care, we had the time to talk a lot with the nursing staff and to observe. We soon felt the need to establish a world "after" Layssa's hospitalization.

After several months of reflection, we decided to take the plunge and create the association À côté de toi. The association supports newborns, children and adolescents hospitalized in intensive care, their families and the nursing staff. We are convinced that by improving the quality of life of sick children, we can generate a direct positive impact on parents, siblings and nursing staff.

Through our actions, whether in terms of the quality of care we provide or our day-to-day comfort, we bring them comfort, happiness and serenity. Every action we take contributes to everyone's well-being.

One of them is the pyjpyj project. Can you tell us more about it?
We had noticed many negative points about the clothes given to the children. They were often inappropriate, especially when it came to passing cables and tubing, which caused a great deal of stress at a time when children need to be calm. The clothes were also uncomfortable and rough, which could hurt the children's sensitive skin.

Based on this observation and the needs of the children, we decided to renew the clothes of the little patients aged 0 to 16 by offering them more comfortable clothes in cheerful colors.

For this project, we selected Petit Bateau as our clothing supplier and carried out a series of tests in partnership with the HUG to validate all the models.

To find out more about the pyjpyj action or to make a donation, click here.

A côté de toi association's pyjpyj project

What's the next chapter in the A côté de toi adventure?
We have a long list of projects in mind to improve the quality of care and day-to-day comfort for sick children, their families and nursing staff. This involves hiring staff dedicated to sick children to brighten up their days, such as story counters and therapists.

The purchase of breastfeeding cushions, improvements to the parents' rest room (e.g. installation of coffee machines), or the provision of parking spaces close to the hospital for longer stays by parents. And, of course, we hope to implement this not just in Geneva, but throughout Switzerland.

Our biggest challenge is to get our ideas accepted in the hospital sector, which is traditionally known for being difficult to access, and to implement our projects for the benefit of children, whatever the cost.

Corinne & Hassan, what's the best thing we can wish you today for tomorrow?
Don't forget that, despite this painful period, we have a very bright future ahead of us.