
Here is the story of our little star, Rose, dead and born on the 31st of March 2022.
Rose is our second daughter, and we were surprised to be so quickly pregnant as we had difficulties to get our eldest, Louise. Even before seeing her, she brought us so much joy.
The pregnancy started well, she was growing, and her heart beat as expected. No cloud in the sky. Then, after five months of pregnancy, a problem was detected in the growing curve. At first, it sounded like an observation on which we didn’t have to worry too much about. But after a few weeks, it was confirmed that Rose had been contaminated by the cytomegalovirus.
We started an intensive follow-up with weekly medical exams to analyse the development of Rose and especially her brain. During this marathon of medical exams, we were riding an emotional rollercoaster. Unfortunately, at 31 weeks of pregnancy, after a weekend of hope and relief based on preliminary results, the conclusion of the MRI scanner was awful: there was major damage on the brain of our little girl. That would induce major disabilities after the birth, physical and/or mental. Even if the prenatal diagnosis cannot precisely specify the consequences on a living baby, they would probably be extremely severe.
The day we received the conclusions was probably the worst day of our lives. We were paralysed by a storm of emotions. We were facing two different path. On the one hand, a life with Rose by our sides, with all the future difficulties for her and for our family and on the other hand a second path, painful to imagine, without her. Fortunately, our oldest daughter had a long nap that day. We had a few hours to process the situation and be able to speak again.
In the evening, we met our gynaecologist, and we discussed the different options once more. Either we keep going with the pregnancy and get in touch with specialists who help parents with disabled children or we decide to interrupt the pregnancy as the unborn child would have untreatable and severe disabilities. A medical abortion can only be considered if two independent doctors agree on it. In our case, the whole medical team (gynaecologists, paediatricians and neurologists) had given us the green light, if we ever chose that path.
Even if we had already discussed this hypothetical choice over the previous weeks, choosing to end Rose’s life before it had even started was a painful decision to make. We don’t know if there was a better choice for her, but we sincerely believed it was the “least worst”. After staying up virtually all night, we confirmed our decision to have a therapeutical abortion in the morning.
Therefore, the day before her birth/death, we spent one last day the four of us together. We took pictures with the name of Rose on Marie’s belly, took family pictures. In the evening, when Louise was in bed, we said goodbye to Rose by reading letters that we had written. It was hard but we thought we had to say goodbye properly.
Then, we spent a week (there is a legal 6-day waiting period between the decision and the abortion) in the blizzard, crying, taking care of Louise, crying, planning the funerals while Rose was still kicking, crying, going to hospital to plan the hospitalization, and still crying. We also had beautiful and difficult discussions with our parents and a friend who had lost a baby after 5 months of pregnancy.
We also decided to share our decision with our family and close friends. To do this, we wrote an email with a description of our situation and asked them to refrain from sending us any messages. Indeed, at that time, we needed to stay in our bubble and didn’t want to interact with other people, even receiving sympathy messages.
As suggested by our friend who had lost her little boy, we decided to create as many memories as possible. Therefore, the day before her birth/death, we spent one last day the four of us together. We took pictures with the name of Rose on Marie’s belly, took family pictures. In the evening, when Louise was in bed, we said goodbye to Rose by reading letters that we had written. It was hard but we thought we had to say goodbye properly.
On Thursday 31st of March, we drove Louise to childcare, and we went to the hospital. The first step of the medical abortion was to stop the heart in utero and then to provoke the delivery. I refused to take the proposed sedative, I wanted to be fully aware of everything. The two gynaecologists who proceeded to the abortion were empathic. They did their best to help us and make it as easy as possible. We wanted to see her heartbeat before they stopped it and even if everything was already set up and sterilized, they took the time to show us the ultrasound image. We are incredibly grateful to them.
During the few hours between Rose’s death and birth, we felt sadness of course but also and mainly relief. She was gone, peacefully in my belly. There was no longer an alternative option, no more “what if”, only one path in front of us. We were another step farther on our journey.
When the delivery came, we met Rose. She looked so peaceful. We kept her in our arms for a few hours. Her grandfathers also came to meet her. We appreciated that other members of the family saw her as well. We keep happy memories of these few hours with Rose. Jérôme put her into the little bed with our presents (blanket, cuddly toys, pictures, …) and we left her there.
Before the birth, we could not imagine how it would be after because it was so intensively hard. However, even if the sadness was overwhelming, we found some peace. We were still in the storm but this feeling was like a lighter cloud on the horizon.
In the morning, photographers from the association “Au-delà des nuages” (Beyond the clouds) came to take pictures of Rose to offer memories to parents of dead children. We hesitated but we finally decided to let them go alone. Indeed, we preferred to keep the image of the evening before in mind (still warm in our arm and when we put her in bed). We left the hospital in the afternoon and Jérôme brought Louise back home from childcare. It was so nice to hold her, warm and alive, in our arms.
Before the birth, we could not imagine how it would be after because it was so intensively hard. However, even if the sadness was overwhelming, we found some peace. We were still in the storm but this feeling was like a lighter cloud on the horizon.
Nevertheless, we still had to deal with her funerals. We had decided to keep it simple: only an informal ceremony with our families. We buried her hashes in the garden in front of our home and we decided to dedicate a positive and happy place to Rose by installing a bench in her name (“Le banc de Rose”). However, in the meantime, we both lived crises of conscience by wondering if we should go to see her again before the cremation. Luckily, the funeral director was so understanding. He showed us compassion and remained available as much as we needed. At the end, we decided to follow our first choice, and not to see Rose in her coffin. We were free from the burden when the cremation started, and hesitation was no longer on the table.
During this strange maternity leave without my baby, I stuffed myself with testimonies I read in books and listened to in podcasts. I needed to hear different stories and to be aware of the upcoming difficulties, to hear some leads. I still see myself gardening and crying at the same time, listening to podcasts.
The main feeling that Rose left us is not anger, but mainly gratefulness. We are grateful to the medical staff. They remained professional but with a lot of empathy, we appreciated to be in such good hands during this painful process. We feel lucky to have close friend, family, and available parents. In such dark moments, we detected the beauty of humanity.
Nowadays, we appreciate it when people talk to us about Rose. We heard in a podcast: it’s not Rose who is sad, it’s the disease she got which is. Our second daughter will always be a member of our family.
Marie and Jérôme, Rose's parents
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