Bénédicte's story
Bertille, our love baby
Bertille is our fourth baby, a wanted and waited for child. However, very quickly the medical diagnostic fell like a bolt from the blue: our daughter had Trisomy 18 (Edward’s Syndrome) and a fatal heart malformation. We were not sure she would be born alive and did not know how long she could live for. After a period of reflection, my husband and I decided to welcome and accompany her right to the end.
We prepared our three oldest girls (8, 6 and 3 years old) for the arrival of their little sister without hiding that they might not see her if she died quickly in difficult circumstances.
The day of her birth, which took place at Saint Vincent de Paul Hospital (Lille), we discovered the face of our baby with wonder. She was small (44 cm and 2.3 kg), pretty and looked like her sisters. Only her little hands, which were often closed, betrayed her vulnerability.
Our daughters came to see her as soon as the next day. They were able to kiss, cuddle and hold her in their arms. Bertille was in a continuous care service and benefited from all the medical teams attention, but she did not have any specific help. She breathed by herself. Having a weak heart, feeding her was the most difficult task: at the beginning she was fed by bottle, but later a gastric tube was fitted in order to feed her more easily and so that she did not exhaust herself through sucking.
We baptised her in the hospital chapel with our children, some family members and two staff members of the hospital. It was a very moving moment which brought us a lot of comfort and joy.
Bertille stayed in hospital for one and a half months. I went to see her every day despite the 70km which separated me from her. I made the most of these intimate moments with Bertille to do “skin to skin contact”, to change her, give her a bath, and let her listen to songs by humming tunes into her ear. Sometimes, I watched her sleep or helped her to feed. Whenever I could I talked about Bertille and her evolution with the paediatrician. The diagnosis remained the same and I knew she would progressively go towards heart failure. But the doctors reassured me that they had medicines to relieve her when that became necessary …
During this time, there were two particularly difficult days. Her heart weakened and we all thought that she was going to die. We slept at the hospital to be near her, she was put on oxygen for a while. But each time, she managed to get over the moments of extreme weakness. It was surprising and prodigious to see all this strength of life assembled in this frail little child.
Faced with this new rhythm, our family very quickly offered to help us. We were not alone. A circle of solidarity created itself around us. We were surrounded and carried along by many people, including the medical team, who ensured that Bertille was comfortable and developing. Day after day, a relation of trust installed itself between us. It was reassuring to know that Bertille was well followed and that a sort of second family watched over her in our absence.
At the weekend and on Wednesdays we all went to see her together. When I was at home with our three eldest daughters, I tried to spend privileged time with each of them. They needed our presence, asked lots of questions and felt apprehensive about the upcoming death of their little sister. All three expressed themselves differently according to their sensitivity and age.
After several temporary returns home, the general state of Bertille remained well and we decided to welcome her home. As soon as we arrived, we showed her all the rooms of the house. It was wonderful and so un-hoped for at the beginning. We were happy and fulfilled. At last we would be able to make the most of time with her and not have to continually leave her. Bertille did not have a specific treatment except some medicines to take for her digestion, some painkillers if necessary and a sedative to be administered if she was agitated. We went to the hospital once a week so that the paediatrician could examine her. A physio came every morning to stimulate her hands and do some physiotherapy chest massage when she got a cold.
Bertille was not suffering. When she wasn’t well, she showed her discomfort by little whimpers rather than crying which quickly wore her out. In general, we managed to calm her by taking her against us and rocking her. We sometimes gave her some painkillers to relieve her.
When the weather permitted it, I went to collect my children at school with Bertille in the pram. What joy for my daughters to show their little sister to their friends and teachers. We also went away for a whole weekend with her. All six of us, 150 km away from home. A real holiday!
Bertille was a baby who was very sensitive to touch, to looks, to caresses, to all the gentle words we directed at her. Her angel like smiles made us literally crack as well as the searching look she gave when we approached her. She really loved music and we were really able to create a special relationship with her. We wanted her to feel as well as possible and fill her life with happy and gentle moments for her.
Our daily existence followed the rhythm of hers. The longest task was to feed her with the gastric tube. The hospital staff taught me how to put it in so that I was able to change it when necessary without having to ask a nurse to come to our house. My husband and I organised ourselves to give either the last meal at about 11pm or the first meal at about 5am. Several times my mother came to relieve us and take charge of the night feeds and thus allow us to rest.
For the rest, Bertille was like any other baby. She had periods of being awake and periods of sleep.
As for her three sisters, they came to be with her whenever they could. They liked holding her and caressing her, singing her songs. We were lucky to be able to live some simple but unforgettable moments all six of us like Mothers Day, Fathers Day and my husband’s birthday. We even helped Bertille blow out the candles of her 2 month birthday cake! Family and friends came to visit and were able to meet her. We lived all these moments intensely because we knew that Bertille would not live for very long. The most important thing was to live for the present without looking ahead to the future, telling ourselves that each day was a present.
Like us, the children had some very difficult times, especially when Bertille showed signs of weakness. It was very hard, but at the same time very rich and strong. We were submerged by a rush of tenderness, a total concentration of love for this child. We took lots of photos of Bertille as well as films of our life with her. We knew that they would help live the future events.
At nearly three months, Bertille left us. She died in the way my husband and I wanted her to. We were at the hospital, the paediatrician took care of her, we were able to keep her in our arms. She was peaceful. We had time to kiss her, caress her and say goodbye murmuring all the words of love we wanted to say. Then her little heart stopped beating forever.
We included the children in our grief. They saw the body of their little sister and took part in the funeral service. They were very sad, had a lot of questions and felt a lot of anger and revolt as well. But the experience lived with Bertille survives in another form. Following the advice of the hospital, I gave each one of them a box containing a photo album, drawings that they had made for their little sister, a cuddly toy and Bertille’s clothes. Since this, whenever they are sad, they take their memory box, look through the album, re-evoke the moments spent with her and we talk about their sadness together. It helps them a lot. As for me, during Bertille’s life, I regularly kept a book relating all the different events and noting all my impressions, they will thus be able to remember what they experienced with her when they are older.
Two years later our fifth child was born. Since the first scan was normal we decided to trust life and the pregnancy went well. We never hid from our last child, who is now nine months old, that she had a sister, born two years before, but who is now dead. We will relate her life later. Because Bertille is part of our family and remains very present. We bring her up very often and easily talk about her between ourselves.
After the birth, I found many common traits between this new baby and Bertille : they looked like each other physically and had the same “mimics”. Inside, I was worried that in welcoming this new baby I would forget Bertille. But several times, when I was holding my baby in my arms, I cried because I missed Bertille so much. I was overcome. This experience let me understand that these two babies were two different and unique little beings and that I would never forget Bertille.
Today the wound that the loss of our child represents is still there, but our sufferance is much less acute. Bertille really opened up our hearts to a torrent of love. This love that we gave and received remains stronger than anything. It cannot be forgotten.
Our story with this baby remains a marvellous treasure that gives more value to life and leaves us in peace.
Bénédicte, mother of Mathilde, Alice, Eloïse, Inès and Bertille, born on 12th April and died on 10th July 2004.
