Fernando: brave every step of the way

Fernando is only a year and a half old when he drinks, by accident, a toxic product burning his oesophagus. Unable to feed himself, his days are numbered. Thanks to the competencies and expertise of the CHUV where children are operated on, and La Maison who welcomes and cares for them, he will soon be able to speak and feed himself normally again.

Fernando was born on the 12^th of November 2014 in Lokossa, Benin. On a summer day, his life is turned upside-down. The family is visiting friends. The toddler is only 18 months old. As he is playing with his brothers, the young boy suddenly screams. His parents rush towards him to discover that he has drank, what he assumed to be water, but was in reality caustic soda! A toxic product both colour and odourless used in the fabrication of soap in the family house. From that moment on, his and his family’s life turn into a nightmare. Desperate after this dramatic accident, his parents take him quickly to two sanitary centres before his transfer to the hospital in Abomey in the south of Benin.

A temporary solution as he awaits his transfer to Switzerland

The medical tests reveal a caustic oesophageal stricture. Fernando receives emergency relief that allow him to live, but the damages are terrible and require a complex surgery which cannot take place in Benin. Fernando will need to be transferred abroad for this operation. And it will be towards Switzerland, thanks to Terre des hommes. In November 2016, during a mission of the organisation and the CHUV in Benin, the doctors allow Fernando to feed himself through a tube connected to his stomach. The aim is for the young child to be robust enough to travel to Switzerland. Until then, the toddler was fed via a nasogastric tube.

Under regular care, Fernando seems to be coping with his condition quite well. His parents’ concerns remain permanent. His family, with limited financial resources, is widely affected by the accident. The small shop of his parents is fragilized by the situation. Determined, they remain ready to do anything to save their child. The good news is finally delivered when Terre des hommes declares the young boy able to travel. His transfer is scheduled during the month of May 2019. A weight drops off his parent’s shoulders, although they are well aware that they will have to let their child travel alone to an unknown country.

Bravery, timidity and love of life every step of the way

Fernando’s plane hits the tarmac in Geneva on the 30^th of May 2019 after a nine-hour trip. A first medical consultation is rapidly scheduled and the doctors take on the challenge of allowing the child to feed himself normally again. At the time, it is still impossible for him to swallow solid or liquid food. A series of regular medical consultations starts then; the doctors should be able to slowly dilate the oesophagus of the boy. This mechanical widening should allow him to swallow again. Even if he is reluctant to his visits to the hospital, Fernando proves to be extremely brave; an inspiration to all of those who accompany him during this complex procedure. At La Maison, Fernando is a timid child. Limited in the use of his vocal cords, he rarely speaks. However, he is very joyful when he takes part in the different activities organised. From sculpting play-doh at the Kindergarten, to playing in the ball pit, this little boy loves to play!

An emergency transfer to the CHUV

On a Monday morning, the tube allowing him to be fed breaks. He must be rapidly taken to the CHUV for a consultation. I am asked if I would like to accompany him, and my immediate answer is yes. At Terre des hommes, every trip with a sick child is an extension of La Maison. For every person taking on this role, this is a great responsibility. Taking care of Fernando is a true token of trust, and I am very grateful for it. Working in the offices of La Maison, Fernando doesn’t know me very well. He has witnessed me visiting the children play with my camera. As we prepare to leave La Maison and I sit him in my car, he expresses his displease. Taken from an activity at the Kindergarten, he clearly is not looking forward to yet another hospital trip. Since his arrival, Fernando regularly goes to the CHUV and it is always a difficult moment for the young boy who seems to enjoy his time in La Maison. I quickly understand that he is very timid and it will be difficult to approach him. During our ride, I try to reassure him, and, quite naively, attempt to get him to forget where we are headed to. So, I point out the trucks we cross path with on the motorway, the “big” ones, the “double” ones, those with cars on top of them… And we arrive. I carry him out of the car, but he doesn’t appreciate much the proximity between us. After a quick stop at the admissions desk, we take the elevator up to the polyclinic for his X-ray.

Toys to counter the fear

There are boxes full of toys in the waiting room for children to play with, so, I sit down on the ground to play with Fernando. He looks at me, and, as if by magic, gives me a piece of the puzzle he is working on to invite me to play with him. We come to get us and he takes my hand. I am relieved by this sign of his trust in me. I then think to myself that I must get out of my way to help him. I accompany him to the X-ray room and witness how uncomfortable he is laying on a cold leather bed and facing adults he doesn’t know. I try to get him to understand our goodwill and reassure him. It is difficult attempting to understand everything these children feel and keeping in mind that they are in an environment that is in no way familiar to them, and that, at times, they feel lonely and disoriented. Reassuring them, calming them when facing their fears, giving them courage; all of it is at the core of the mission of anyone aiming to their survival. After the X-ray, we are sent to another room to wait for a consultation with the doctor looking after Fernando. And we play some more! Puzzles, books, toys, there is much to do for a child that has not been used to so many different games to play with. Fernando cooks for me. Standing in front of the small plastic kitchen in the waiting room, he cooks some pineapple, pepper and cucumber and brings over to me his delicious meals. He pretends to be washing dishes whilst I eat before hiding behind my back the small plastic food toys. Witnessing this child cooking, as he, himself, is unable to eat and has been for already the past two years, is very unsettling and paradoxical. It is also proof of his interest for food, which is not the case of all the children in similar situations. Some have completely lost contact with normal food. After a little while, a nurse comes to get us.

No tears, no complaints, only courage

The light atmosphere of the waiting room rapidly fades to give room to the anxiety of the consultation. Laying down on the hospital bed, Fernando points to a little tube to make soap bubbles that children can play with. The nurse hands it over to him and he gives me a sign to blow them on him. With his little finger, he pops the bubbles I blow in his direction. Then, the doctor arrives to replace his tube. Fernando looks at her while she touches his abdomen, his worried look lets us guess how uncomfortable he feels. I think to myself how brave he is as I witness the scene. Even though he rarely speaks, Fernando is fully capable of understanding what he is told and what is going on around him. I cannot help but think of his courage in facing the heavy consequences of this accident and the complexity of his medical care. The bravery of all the children welcomed in La Maison is inspiring. On their way to recovery, they are “little warriors” fighting against the elements that affect them.

A long road to recovery

Fernando will stay a few more months in La Maison; his road to recovery will be complex. No doubt that he will be brave every step of the way, and accompanied in the best way.