Larissa Rocha Lupi, a 32 year old psychologist from Rio de Janeiro, has gone through the pain of having a pregancy loss twice – in a break of six months she and her twin sister, Clasrissa, had a spontaneuous miscarriage. The cruel sadness, medical insensitivity and the alck of understanding of family and friends, who didn`t know what they should do to help, made Larissa know other mothers and then give voice to those women who also lost their kids prematurely. She developed the project “From grieving to struggling”, fighting for more sensitivity, sympathy and special care with pregnancy and neonatal loss, searching for more efective policy changes and medical assistance improvement. A work that tries not only to minimize family suffering, but to turn a hidden pain in a public cause. Larissa also represents “ We must talk about it”, a platform for people to open their hearts anonimously online giving voice to pains and difficulties related to pregnancy and post birth.
A statement to Laura Capanema
“My sister lost her baby with almost tem weeks of pregnancy. The causes weren`t very clear, but everything led to a kind of ‘natural selection’: when the pregnancy is interrupted naturally by the body itself. It means, according to doctors, the situation is relatively common, specially in the first three months. But very little is said about it. Many of the women who have gone through this – mothers of children who weren`t born – haven`t been understood and have a feeling of lonelyness inside them. Someone who goes trhough pregnancy or neonatal loss needs to face the taboo around the death of someone who wasn`t born (or lived very little).
Clarissa was already the other of a boy, but was planing a pregnancy for three years. Frustration with interrupted pregnancy caused her to be almost depressed. Besides feeling a huge void, she faced the difficulty of friends and family in understanding the dimension of her pain. Most of the people said what everybody feels ‘relax, in some time you will get pregnant again’ and ignored the fact abortion means a real loss, specially in that case, a dream abruptely interrupted. The conception of a new child would never substitute the lack of the child who is gone. It was not that simple.
One day after receiving the News she went to a private maternity in the South Zone of Rio de Janeiro to go through a procedure. There, unexpectedly, she had the same nurse that other mothers who had just had babies ( she could hear babies crying ). Besides that the medical staff acted cold and hard. The doctor, for instance said: ‘your son was not a baby, just a fetus. A fetus that didn`t have heartbeat’. A very tehnical lenguage and useless for someone in a fragile situation. I was close to everything and had no doubts that the logistics at that clinic maximized patients suffering besides beign an obstacle for the grieving process.
A month after she was still very anxious. But got pregnant again. Only this time it was in double. I was pregnant too. So after that nightmare, we were so enthusiastic and together! – we wre twins and were pregnant at the same time. We talked everyday and took care of each other . However we were always anxious. She had mixed feelings for the previous loss and for the expectation of a new life I was afraid of going through something similar to what seh had gone through.
But Clarissa had a happy ending, despite Henrique was a premature with 34 weeks – the amniotic sac broke and we had to do a C-section in a hurry ( she believes that the facto f getting pregnant again very soon, and not having waited more time to elaborate grieving contributed for a more fragile pregnancyl; and a premature baby). With me it was different: with almost 5 months (19 weeks), I had a bleeding and came back to the same clinica my sister had gone to. I lost my baby. According to the doctor the embryo was malformed – it is a desease, it causes a cell malformation around the fetus.
The situation got harder when they took me to a room decorated with a stork on the door. The nurse who was taking me back to the room came to congratulate me for my baby – the one I had lost. ‘Guys, does nobody here reads the charts? Anyone looking to learn about the state of patients’ – I asked filled with indignation. Still I needed to fight with the doctors because I wanted my husband with me during the procedure (request that was denied). I felt disrespected, and still judged by my desires.
I was sedated and woke up in a completely aseptic environment without any trace. I wanted to see what the doctors had extracted from me – however there was no baby indeed, the embryo trace represented the life of my son, and having access to it would enable me to realize his death. No one heard me. There was a team that was said sensitive and humane, but prepared only for the happy ending. They didn`t know how to handle failure.
The pregnancy loss is an invisible grief – if the baby is not born alive, people believe that in fact the mother is not linked to it … after all, ‘he was not born’ or ‘born but did not live.’ Plus there is an inability of our own culture in dealing with finitude, it is even more difficult in these cases, when mothers are matriarchs of a pitch, a nothing, a murmur.
The situation requires training and qualification so that doctors know how to link this news in the best possible way. Of course you will not eliminate our pain, but it is important that we feel a minimum of empathy for the human being who is on the other side. Going through this pain twice made me feel the need to help other families break paradigms and fight for more human hospital enviroments. Trying to avoid secondary violence.
“As a starting point, I organized a petition calling for more care on the part of the maternity that violated our rights – if not an entire wing reserved for pregnancy loss, a separate room – and trained professionals to be more careful with this type of patient. It was necessary to talk about this fight and to go beyond: to partner with hospitals and health staffs.
In December 2014, three months later, we at last had a meeting with the medical staff. The clinic did not actually create a separate wing, but went on to identify the rooms in a different color – purple – for risky pregnancies.
I started to spread my story and received numerous outbursts, including from people whoe were close to me and I did not know they had been through it. Breaking the silence emphasized how the issue is still veiled in our country. So I decided to create a fan page “From Grieving to struglling” with more than 14,000 followers nowadays. The designer who made our visual identity went through the same experience and professionals from many fields have become familiar with the cause. Developed a collaborative platform that organizes support groups, indicates psychological monitoring, and posts with suggestions for movies and books on the subject. Also actively fought in politics: it was in tears that we received the news of the approval of PEC No. 16/25 unanimously in Alerj. The Constitutional Amendment Bill provides for maternity and paternity leave to public servants and employees in cases of miscarriage and premature birth. Who helped us with this was Alison Fernandes, lawyer, a strong woman, former chairman of the Penitentiary Council of Rio de Janeiro and who also wento through a poajn like this – she recently faced the loss of their first child, Antonio. At delivery.
For us it is extremely important to try not to succumb to the drama. And try to find new meaning, to give a new look into existence. You have to see how much, pain can be important to change the very meaning of life – in the face of it, the human being grows more mature and can fly away.
We also conducted presential meetings once a month, in a room at Largo do Machado (that is getting small for a dozen participants). We have people who are directly affected by pregnancy loss – mother, father, sister, anyone who feels they can help and want to share your pain. Talking about it is already highly therapeutic and prophylactic. I always quote the phrase from Adalberto Barreto psychologist, Ceara, who founded the community therapy in Brazil: “When your mouth shuts, the body speaks. And when the mouth speaks, the body heals”.