Mission and approach
The story behind À côté de toi
One day our daughter will ask us: “Mom, Dad, where was I at my first Christmas?
“You spent your first Christmas with your sister, mom, and dad at the HUG’s pediatricpaediatric
intensive care division.”
On the morning of 28 November 2019, you didn’t feel well. You were having trouble breathing. Mom took you to the pediatric emergency room at HUG. The doctors immediately confirmed respiratory failure.
From there, everything went wrong very quickly. They transferred you to the pediatric intensive care division. You had severe bronchiolitis, and you were tired and had a lot of trouble breathing.
The doctors told us that you needed to be intubated urgently. We were shocked to see you in this condition. We to the medical team to take care of us. We didn’t understand what was happening and what you were going through. This day was a significant turning point in the life of our family.
It is an indelible part of your history that will forge your magnificent character and give you the incredible joy of living.
We decided that mom would stay with you the first night while dad went to look after your older sister, to whom we did not immediately explain what was happening. We didn’t know what to tell her.
The next day, mom and dad began to realize the reality of the situation.
Our daily life was turned upside down; we had to find a new way to manage work, take care of your older sister and support you. A radical life reorganization was necessary.
We wanted to stay with you while preserving your older sister’s right to continue living a normal life.
We set up a schedule and a rotation system to take care of both you and your sister, who had just celebrated her 3rd birthday a month before your hospitalization. We took turns to be present at your bedside while continuing to have dinner, read bedtime stories, and take your sister to school. It seemed essential to us to maintain her routine that she loved so much, to protect her as much as possible while beginning to explain the ins and outs of the situation to her, which we did not really know.
Your life in hospital was full of ups and downs. You are constantly exhausted by the sound of the alarms on your various machines and the sliding doors opening and closing several times a minute. But you held on; you fought relentlessly. It impressed us and gave us courage.
After a week of nightmares, you finally came out of your first intubation. The sky was opening up, and we thought we could see the end of the tunnel. We were relieved about the improvement in your condition. We could plan your first Christmas, and we were looking forward to it. Everything was looking good despite your weaning from sedation which was very difficult for us to see, as you were in a constant state of withdrawal, and it was hard to recognize you.
However, the respiratory distress reappeared soon after, and we rushed you to the operating theatre because you couldn’t breathe.
Your life was at stake, and once again, our family was devastated.
After an hour and a half, you again came out of the operating theater, intubated. We were dumbfounded at the doctors’ announcement that you had circumferential subglottic stenosis as a result of your first intubation.
After a long conversation with the medical team, our strength returned a little, and we went to see you. A new treatment began. This time you found it even more difficult to bear the slightest noise or light. You couldn’t sleep deeply for more than a few minutes, despite the heavy sedation, so we came up with a trick that you liked very much. We created a makeshift “hut” with sheets to isolate you from the light that never went out in intensive care.
A week later, you seemed ready for a second visit to the operating theatre to validate your extubation.
To everyone’s surprise, the stenosis was practically gone. We couldn’t dare to believe it. Moreover, to our great joy, your weaning was going much better than expected.
Christmas was approaching, and unfortunately, you would have to spend your first Christmas in hospital. Dad would spend the evening of 24 December 2019 with you, and mom would stay with your big sister.
You were then transferred to the pediatric ward for the end of your weaning period. We rarely dared to leave your room, as the ward was understaffed at the end of the year.
From 30 December onwards, your condition deteriorated again before our eyes. We tried hard to get the specialists to come and help you, but they had all gone on holiday. After four harrowing days, you went back to the operating theatre for a third time on 3 January 2020.
The medical team noted the return of the stenosis, this time with scar tissue requiring your immediate transfer to the CHUV, where one of the most specialized teams in the world would operate on you on 5 January 2020 using a globally recognized technique developed at the CHUV.
With all the difficulties that a hospitalization away from our home entailed, your older sister’s routine dramatically changed as she had to stay with your grandparents often.
The medical team told us that your case was critical and that we had to prepare for an extended hospitalization. Your recovery could take several months or even years.
We were stunned. You didn’t deserve this suffering at 120 days old.
We had to reorganize our family life again, adding a new variable, travel between Lausanne and Geneva.
After two more visits to the operating theatre of the CHUV and a period of weaning, you would finally be able to leave the hospital at the end of January 2020. The four of us could finally be at home together.
On 24 February 2020 , after your sixth and last visit to the operating room, the doctors finally announced your recovery. We couldn’t believe it. We thought that our life would be punctuated by trips back and forth between home and the CHUV for an indefinite period.
Today, you are in total health. You breathe the joy of living.
We created this association to pay tribute to your perseverance, courage, and fight for life.
We also created this association to pay tribute to your older sister.
Moreover, we created this association to contribute positively and concretely to the improvement of the daily life of sick children, their families, and the nursing staff.
We will always be by your side.