‘It would have been better to see my son dead and say goodbye’: woman defies ‘perinatal grief’ taboo

“I thought I was going to be a normal mom. And I was a mom with empty arms.”

But Venezuelan Ileana García Mora corrects: “we are all normal. Life and death are natural processes, but one is more painful than the other.”

She defines herself as an activist for perinatal grief and defends the visibility of the issue, so that people can talk about what to do when a child dies. For her, “it is important that information is available, that mothers have choices and that close family members have the minimum tools to deal with grief.”

There was a time when García made decisions without knowing it, in the midst of pain. Or he needed to hear things like “better that way, let the body discard what doesn’t fit”.

It turns out that “whatever is useless” was Matias, her son, who was born dead by cesarean section.

She spoke to BBC News Mundo – the BBC’s Spanish-language news service – with her other son, Gabriel, almost a year old, suckling close to her. Gabriel is what is called a rainbow baby. And, like the optical phenomenon, a storm first occurs for it to appear.

Ileana García’s nightmare began with a phrase: “I don’t hear the heartbeat”.

Garcia’s Nightmare

Perinatal death is death occurring between the 28th week of pregnancy and 28 days after delivery. Annually, around 2 million deaths of this type occur worldwide (one every 16 seconds), according to WHO (World Health Organization) estimates.

On average, human pregnancy usually lasts between 37 and 42 weeks. Loss “is most frequent during the first trimester; it occurs in one in four women,” according to Spanish midwife Celia Padilla.

As the pregnancy progresses, the occurrence decreases. “In the second trimester, it affects one in every 50 women, and in the third, four in every thousand”, explains Padilla.

Ileana García felt that something was not right in the 38th week. And the doctor confirmed the worst.

Two options were presented: normal delivery or cesarean section. García, after this experience, defends the most natural solution possible. “The natural birth of the child, even if it is dead, can make you process”, she advises.

Padilla specializes in perinatal deaths and how best to navigate this grief. She confirms the recommendation. “It’s painful to deliver a lifeless baby vaginally, but it’s the best thing for the mother’s physical recovery and, thinking about a subsequent pregnancy, a cesarean is not ideal”, she explains, always warning that everything must be done correctly. according to the specific circumstances of each case.

She also highlights the psychological benefits. “The process [de parto normal] makes you aware of what’s going on. It’s hard, but it puts you in the face of reality. C-section is a quick way to end the matter, but it doesn’t help with grief.”

But no one told García that, and she wanted to end it immediately, sedated. “I want this dead baby out of me,” she said.

And he didn’t say goodbye to him either, because he was in shock. “I didn’t receive my son. It would have been better to have said goodbye to him”, she laments. Today, García questions why the clinic didn’t insist she see the baby.

A few days later, when he realized what had happened, García had panic attacks. “I thought I was going to go crazy with pain,” she recalls. After two weeks, she decided to seek help and started therapy.

necessary protocol

Chilean gynecologist Andrea von Hovelin was part of the advisory team for the Dominga Law, enacted in Chile in 2021 to implement a universal protocol in hospitals and clinics on perinatal death.

“The protocol must include respect for time and silence. Everything has to be explained, as many times as necessary”, defends von Hovelin, referring specifically to the moment when the mother receives the news.

Celia Padilla also recommends that the mother be notified “in a quiet environment and with a minimum of people present”.

The two professionals highlight how it can be positive to see the deceased baby and say goodbye to him, as long as it is a voluntary choice. “It helps [a mãe] to position oneself in loss and to be aware of reality”, according to Padilla.

For this, the protocol followed by Padilla includes doing exactly what you do with a live newborn: bathing, accommodating and dressing.

“When [o bebê] it stays in the womb for a long time, it can look impressive and the family is informed,” she says. Then you give yourself as much time as you need to take pictures and say goodbye.

“We also make a box with the foot prints, the umbilical cord clamp and some diaper. So the family takes something home. Keeping memories can be a psychological help in mourning”, explains Padilla.

Jessica Rodríguez Czaplicki, president of the Spanish Association of Perinatal Psychology, points out that, although actions such as seeing the baby, saying goodbye, keeping memories or taking pictures “facilitate the elaboration of mourning, they must be explained properly, informed with great delicacy and without to force”.

Padilla and von Hovelin agree that mothers who have suffered a loss should not share the space with other expectant mothers, with mothers who are with their babies or “near a delivery room where they hear babies crying”.

And of course, ideally, there should be psychologists who are experts in perinatal grief throughout this time to accompany them.

Mourning taboo

“When I got back to work, no one said anything to me. Everyone ran away from me as if I were death itself. People expect you to put everything under the rug,” recalls García.

She recounts with indignation the multitude of supposedly comforting phrases she has heard, such as “God knows what he does”, “God needed an angel” or “the human body knows what to discard”. “Maybe someone will find some solace in that. I don’t,” she says.

Perinatal grief “is something forbidden, unknown and taboo. Society is silent about it and does not allow the free expression of the bereaved’s emotions,” according to Czaplicki.

Von Hovelin points out that, as “the child did not exist in the minds of others, this mourning is considered less important”. And, furthermore, “it is hidden with the hope of the future – the idea that maybe new children will come or that one should think about the ones that exist so that they can be taken care of. This generates guilt in the parents and, more often, in the mother.” .

Although, at first, García was not able to do anything that required a minimum of concentration, little by little she began to write down her small daily achievements. “Today I painted a mandala” or “today I read a page from a book on grief”.

Five months after the loss of her son, she started something that was her way of breaking the taboo of perinatal grief: she opened an Instagram account (@lamamadematiass).

“I grew up without having any expectations, other than healing myself”, she says. But the experience made her see that she was not alone.

“Losing a child at 38 weeks makes you feel like someone weird, you even feel guilty. Thanks to the account, I connected with other mothers who, in addition to the loss, had hereditary thrombophilia”, she reports. It was with this illness that, after two years of examinations, García was diagnosed as having been the cause of Matias’ death.

And so she managed to create a community. “We healed together. I’m not a psychologist, but my experience is an usher. And it made it possible to make sense of such a painful loss.”

With this light, García claims mourning. “We are afraid of what they will say, they call us exaggerated, that it is wrong to be sad. Many have come to be ridiculed. But no one should minimize the pain. Only you know the story behind your children.”

In search of the rainbow

After the diagnosis of thrombophilia, Ileana García got a solution (anticoagulants) and a new pregnancy. And with it, a new emotion: fear.

“It’s very strong. It’s a pregnancy of fear and fear that it will happen again”, she recalls.

The experts consulted argue that there is no adequate period to seek a pregnancy again after a loss, but it is important to respect a minimum time, not only for physical recovery, but also for properly mourning.

“It’s normal to have pain, but if it’s disabling, it’s best not to seek a pregnancy,” advises Celia Padilla.

Psychologist Jessica Rodríguez Czaplicki also points out: “pregnancy can be sought as a way to hide the pain for the deceased baby. And that would really be a big mistake.”

Andrea von Hovelin, on the other hand, emphasizes that, if the pregnancy occurs, “a good follow-up would be appropriate. [da mãe] and understand that a new pregnancy will have a greater share of anxiety”.

Ileana García was afraid, but she endured it and, as she recommends to other mothers, she also learned to live her new pregnancy with joy. “It takes patience and self-compassion. Learning to trust.”

Finally, she had a rainbow pregnancy, that is, she came to term, two years and nine months after the loss of Matias, after a deep mourning and hours of therapy.

García knows that things can go wrong, that there are mothers who, no matter how hard they try, don’t find the rainbow after the storm. She puts Gabriel in his crib, after he sleeps in her arms, she looks at the baby and says, “we have the right to believe in miracles”.

Recommendations from psychologists and health professionals

Experts emphasize that this process is personal and each mother, couple and family is a world apart. But, as with other types of grief, it is necessary to respect times and emotions, as well as each person’s way of life. Respect is the key.

For close family members: there are no words that can console. So just follow along.

Avoid saying: “go ahead”, “be strong”, “you’ll get through this”, “you’ll have another soon”, “it’s better this way”, “better now than later”, “you’re young, that’s not nothing” or “at least you already have another child”. These expressions do not comfort or lessen the pain.

What to say: “I can’t imagine the pain, but I’m here”, “I imagine it must be very difficult”. A simple “I’m sorry” may do the trick, or a “what do you need?” question. It can be accompanied by a hug. Sometimes it’s just a matter of standing by, silently, making it clear that you understand this pain, that you’re there and supportive.

Parents must be clear that they can and have the right to express their feelings and pain.

It is normal to feel other emotions such as anger, sadness, emptiness and even hope. You need to give them all space.

Give your baby a name, because he existed.

Go through your grief at every stage. Farewell rituals (funeral, keepsake box) can be good. It can be helpful in case there are brothers or sisters.

Form a group: find and talk to people who have been through the same situation.

Ask for psychological help from specialists in perinatal grief.

Support groups in Brazil can be found at this link.