How to support families in which waiting for a terminally ill child

through this help the charitable Foundation “House of a lighthouse” and perinatal center of city clinical hospital N 24.

The sick

Until recently, about the palliative care of babies, no one heard. Pilot project it has been established by the 24th the hospital announced the mayor of Moscow Sergey Sobyanin. The essence of the project is not to persuade parents, who learned about the incurable disease of the future child, to abortion, and give them a choice. “When a child gets a fatal diagnosis in utero, the family may decide to continue the pregnancy. In this case, “Building the lighthouse” offers several types of assistance – informational, medical, psychological, spiritual, and legal support”, – said the head of the perinatal palliative care program Fund Oksana Popova.

Photo: AP Photo/Petr David Josek Sobyanin: the City will provide assistance to families with children

Most of the pathologies in the child’s development, the woman finds out on the ultrasound. Disappointing if the diagnosis is put before the 22nd week of pregnancy, the direction of the medical termination can be given by the doctor of female consultation. If this occurs at a later period, the woman gets on the Council in the perinatal center, where she tell about the diagnosis and give direction to abortion. Most of the families agree on it. But there are parents who rely on the fallacy of diagnosis, that the child can be cured. Or, take an informed decision in any case is not to terminate the pregnancy. Them after consultation begin to work staff of the perinatal palliative care program “at Home with the lighthouse.” “Together with their parents plan and with the wishes of: if the child is stillborn, and in case Rbaby is born live. They describe all the details that you want to do with the baby: hold hands, take pictures, make casts of prints of hands and feet,” says Oksana Popova.

Parents cherish all the pictures of their child. Photo: Archive of the Foundation “House with the lighthouse”/ Yefim Uranometry him

In December last year, Yulia Nikitina (the surname is changed. – Approx. ed.) my husband lost his first child. Xenia – so they called the baby lived for three whole happy day. During this time they met with her, rocking her in his arms, to christen, to compose her a lullaby to say goodbye and to bury her daughter.

“the results of the first screening at 12 weeks showed that our baby is a high risk of Edwards syndrome – an incurable congenital genetic disease, which the kids don’t live more than a year,” recalls Julia. She was hoping that the first screening was incorrect, but on the 20th week, doctors confirmed the terrible diagnosis. “And I already felt like a mother. My husband wanted this baby, I’m 31, my friends have two kids grow. In short, we decided to keep the baby, no matter what happens,” she continues. On the Council she was sent just to the 24th the hospital. After it Oksana Popova said: “without the support will not leave”. And so it happened. Xenia was born when my dad, who’s always been there, December 18, weighing 1.1 kg and 36 cm In the hospital the family was accompanied by the assistant in childbirth from “the House with the lighthouse.” Immediately after birth the baby was sent to the intensive care unit, but the photographer still managed to capture the happy moment. The Fund helped with the baptism of Susie. Directly in intensive care to the girl came to the priest Ioann Guaita. In the afternoon mom and dad came to visit her, and on December 21 she died. “We have lived important for us happy days. Now the memory of her daughter will remain with us for life,” added Julia.

the end of the story?

Children have towhich even before birth diagnosed with congenital defects, live, sometimes, even less – some for a couple of hours, and sometimes die before birth. Many people think that if the child died, nothing can be done. In fact, believe in “the House with the lighthouse”, you can do a lot. To see the baby, to touch, to give the name, finally, to mourn and to bury him. Valeria Shmeleva (the surname is changed. – Approx. ed.) and non-developing pregnancy in the 28th week. 27-year-old girl was prepared to lose my daughter, which has already chosen a name – Arina. “The doctors told me that with a diagnosis of microdeletion third chromosome of possible incomplete life, but with enlarged heart child can not be born. But I decided not to terminate the pregnancy to years later to wonder “what if…”, – said Valery. The Fund helped the family get to know my daughter immediately after birth. In addition to photographs, they have left the casts of tiny hands and heels.

“the House with the lighthouse” is like a signal to parents, who, as in a storm, nobody leaves the ground under the feet of fear for her child. Photo: Krasilnikov Stanislav / Taskstatus notes Director of the Foundation “House of a lighthouse” leads Moniava

Almost everyone understands why people do the abortion. But few people understand why people give birth to a child with an incurable disease. Scraps of direct speeches of the families participating in the program can be said about many things:

Photo: Vladimir Gerdo/TASS As a social contract helps families to overcome poverty

– If the baby is born and get sick, nobody goes it immediately to choke? Our child just before got sick.

– my dad also never had a chance, he had dementia, however we tried to do everything possible for him and cared. Not to kill the baby thenthat he is sick?

Doctors think: why hurt mom and dad a view of a dead child – and the best of intentions rather carry the baby. And for parents it is very important to consider, to hold, to sing, to be.