Charlotte and Olivier saved their son, César, thanks to the “double hope baby”. Today, they want to break the taboo and break down preconceived ideas about this process. They tell their story in a documentary broadcast on February 9 on France 5, and to aufeminin.
Send out the preconceived ideas about “baby drugs”. This is the objective of the documentary "Le monde en face: L’enfant du double espoir" by Stéphanie Thomas and Arnaud Xainte, aired on February 9 on France 5 (8:50 pm). For 18 months, they followed the journey of Charlotte and Olivier, a couple from Yvelines and parent of three children. Their youngest, Caesar, who will be 7 in March, has Fanconi anemia. It is a rare genetic disease, causing degeneration of the bone marrow and the development of multiple cancers as you grow older.
The little boy's illness broke out when he was two years old, while he was in the emergency room at Poissy hospital, for a simple gastro. " Doctors took blood to check for rotavirus. They noticed that the platelets were very low. 50,000 versus 150,000 at the minimum threshold. They found out he was suffering from Fanconi anemia ", explains Charlotte, “ It is an autosomal recessive genetic disease. My husband and I share the same Fanconi gene (what they didn't know at the time, editor's note). Our child had a 25% risk of being born with the disease. "
Read also : Mother of 2 children suffering from an incurable disease, she testifies "life is precious and unique, you have to enjoy it while you can"
The news of this illness was particularly violent for Caesar's parents. " It was a collapse, mourning for a light and happy time ", she recalls. They find that their son will need a bone marrow transplant if his blood levels (platelets, white and red blood cells) are no longer sufficient to support him. But a gift takes time, and Caesar does not have it. His big brother Elliott is also not compatible.
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The journey of the "baby of double hope"
Very quickly, the geneticist who took care of the family told them about the “double hope baby”, also clumsily called “drug baby”. This is a child conceived using a selection of embryos with a double preimplantation genetic diagnosis (PGD): a first diagnosis allowing to know if the baby will be free from the disease and a second to know if it will be compatible with its sick brother or sister (we then speak of DPI-HLA). If so, the newborn baby donates healthy, unaffected cells through the umbilical cord to the sick child. This is done through a transplant. It is important to note that the baby does not undergo any medical intervention.
“They told us that we could get medical help (via IVF) to have a child free from the disease and that we could also benefit from a little more than compatibility with Caesar. Only it turned out that no French hospital did it, given an ill-suited law ", says Charlotte. French law has in fact banned these “double hope babies” for bioethical reasons: PGD is authorized, but PGD-HLA is not. César's parents then decide to go to Belgium, where the law allows it. After the third attempt, they had happy news: the embryo was compatible with their younger sibling and free from the disease. Charlotte then became pregnant with her third child.
The decision to embark on this "double hope baby" journey was not an easy one. And this, even if Charlotte and Olivier wanted to have a third child before discovering Caesar's disease. "It took us 2 years and the follow-up of a psychologist in a private capacity, because we were aware that we had to answer to this little being in the making", she confides, "It was important to us that he was expected for what he was (a couple's desire for a child) and not for what he was going to bring (his umbilical cord) and he is. "
A successful transplant
Little Marceau was born in September 2019. In the process, César received the bone marrow transplant. “We have no regrets on this course today because everything has worked out wonderfully. Caesar is well and Marceau is free from the disease. Only the umbilical cord was used. The transplant is a successful transplant ”, rejoices the mother. Before giving us (good) news about his son: “Caesar returned to school 8 months after his transplant. He regained real physical form, endurance. He runs, he jumps, he rides a bike and a scooter FOR 1 HOUR. Before the transplant, he did 10 min at most. He has no more bruises on his body. And he no longer has a bone marrow puncture every 6 months to check its quality. "
Today, Charlotte wants to change attitudes on the subject. “We never use the term baby medicine because it’s cold and reducing. Marceau is a desired child. He is neither a medicine, nor a substitute, much less the savior of his older brother. Besides, we'll talk to him about it. There will be no taboos about its design. This report on France 5 is notably a testimony for our 3 children. A testimony of love. It also gives a voice to those concerned and not just to public opinion or to doctors. It frees up speech and if it can help other parents to clear the field and let them know all the possibilities possible, why not do it? ", she explains.