Posted 22 October 2024

We are incredibly grateful to Helena for sharing her story with us as part of Black History Month. She bravely talks about her experience of loss following the death of her daughter, Maila, and the cultural stigmas and taboos that she has faced, but also how she has found comfort in helping others by sharing her story and through the creation of her own personalised baby loss books. 

When my daughter Maila died unexpectedly at 36 weeks and 5 days, it naturally came as a complete shock to my entire family. After all, everything was fine. We had a smooth pregnancy and with only four weeks to go what could possibly go wrong?  

We did everything right, there were no signs of things to be concerned about - at least that’s what I thought. Little did I know that brewing underneath was preeclampsia, which at the time, I had no idea what it even meant. I had seen the word on a birth app before but refused to delve deeper into it because if it is out of sight, it would be out of mind and therefore would not happen to me.  

In truth, ignorance is not bliss, and as much as we hear that pregnancy is a “natural” thing, there are many risks involved that can often be out of our control. Risks we should be educated on from day one, so we know what to look out for if they happen, so that they can be prevented. Of course, there are a million and one things that could happen in a pregnancy, however knowing the common issues that often arise during pregnancy can save lives. This kind of information should be passed down from healthcare professionals on a one-to-one basis so we can truly understand its severity. 

Maila’s dad and I are of Angolan and Afro-Brazilian heritage. As such, we have an abundance of family.

"Our hospital room was immediately filled with 20-plus people. It was exactly what we needed, however, it also meant that we were subjected to 'well-meaning words' that no grieving parent should really have to hear. Hours after giving birth I had to endure the "you're young you can have other children", "you need to recover quickly so you can try again." 

 

There was absolutely no mention or questions about my daughter. In fact, she was already being forgotten - it felt like she never even existed. If it wasn’t for the compassionate care I received in hospital, the wonderful keepsake memory boxes and the online community, I probably would have very easily fallen into the dangerous space of forcing myself to forget and move on.  

Although people said the wrong things, I cannot fault them for being present and trying. I mostly struggled with the family members who didn’t reach out. As we know, bad news travels fast; our family in Brazil, Angola and Portugal all found out very quickly that Maila had died. Yet the people I expected to hear from stayed silent. 

To lose a baby inside you is the most devastating experience. The moments that follow feel like you’re screaming for help into an abyss, knowing there’s no escape and no one there to rescue you. I quickly learned that in my family and on a cultural level these “kind of things” are just not spoken about. It’s brushed under the rug, pushed down and ignored in the hopes that with time it can be completely forgotten. 

The worst part of this way of thinking is that it completely dehumanised my baby’s existence.  Months later, I was encouraged to take photos down, let it go, let her spirit rest and to not talk about it. Yet this would never dare be said about a grandparent or an older loved one who died, so why is it ok when it comes to an innocent, defenceless baby? 

Very quickly, this longed for baby that was showered with love during her baby shower, became an “it” and a “she who shall not be named”. It was quite scary how quickly the language changed just because my baby had died.  

Looking back, I realise just how much cultural upbringing impacts the response to pregnancy and baby loss. In Angola, for example, death is very often an opportunity to celebrate and honour a person. In fact, the Day of the Dead is commemorated on the 2nd of November. However, since most of my family immigrated to Europe, Portugal and England, many of these customs have been lost.  

Unfortunately, a common occurrence with many immigrant families is that they find the best way to integrate into the culture of the country they have moved to is to separate themselves from some of their cultural norms to avoid being considered “uncivilised”. We are often encouraged to put on a front, be “put together” and avoid pointing fingers saying, “look at them”. Losing a baby is a major “look at them”, to be seen as “the ones whose daughter/granddaughter had her baby die”, it is always important to bounce back quickly.  

Anyone who walks this journey of baby loss, knows just how isolating it is and how important it is to connect with families who have experienced what we’ve experienced. To be able to connect on a level where we don’t have to explain ourselves, are less likely to encounter people who will say the wrong things and find people who will just understand us.  

However, within pregnancy and baby loss there are also many nuances and differences that can leave us further isolated in these safe spaces and groups of people who share our experiences. We all long to feel seen and relate to people, whether that’s connecting with families who have gone on to have other children, don’t have other children, are suffering through infertility, have had their relationship completely break down, or who come from specific backgrounds. It makes a major difference and informs how we experience the loss of our baby. Which is why tailored support from Sands and support groups like Ebony Bonds (set up by a group of Sands Befrienders) is so important. They understand the different nuances that make up Black families and offer support not just to parents but to extended family members who may struggle with finding ways to help. 

I found that sharing my story on social media has not only helped me expel the frustrations and anger that comes with losing a child, but also has helped me connect with and give visibility to other parents who look like me, and whose stories are not often seen or heard in baby loss literature or readily seen on social media. Black parents who, like me, were encouraged to suffer in silence. The more we share, the more we can populate these spaces and reach the Black community, a group of people who sadly make up the highest likelihood of babies dying yet are so underrepresented to the point that we avoid seeking support and miss out on what is available to us.  

Coming from a big family, there’s a part of me that still believes our families should be a part of our support system too. Today, there are plenty of resources available for them to be able to find out how best to be present for us in our toughest moments.  

Early in my grief I angrily wanted to cut ties with those who didn’t know what to do or say. I often thought about how, if Maila was born living, I would have been showered with gifts for her. A big part of me was sad that this couldn’t still be the case. Now I look around my house and I see so many keepsakes I bought myself in her name which give me so much comfort. 

"I wholeheartedly believe that friends and family can continue to be a part of the conversation in this way. Offering us gifts that show us they were thinking of our babies goes a long way." 

 

When I was looking for ways of keeping the memory of my baby girl alive, I became inspired to create personalised baby loss memory story books. I started working on Maila’s Present and the first book ‘When I was in your Tummy’ this year for many reasons. I wanted to allow family and friends to be involved in the conversation. Instead of shying away and being silent, they could have given my husband and I a book with our baby’s name on the cover and within the pages of the book. With a character that looks like them and a story that lovingly highlights her time with us when she was alive in my tummy and how she continues to be around us now that she is outside of my tummy.  

As a Black family, I know just how underrepresented we are in books. For the most part, books are centred around white families, which singled me and many others out, making it difficult to relate to something that could otherwise offer us comfort. It became very important to me that these books were inclusive. It was imperative to include all skin tones, all hair colours and varying hair types. No family should be left out when it comes to the representation of their loss.  

Most importantly, having tangible keepsakes allows for a visual representation of a much-loved family member who should be there. Something that can be read in isolation by the parent but also could be shared with uncles and aunties, siblings (if there are any) and even family members who may not have been born yet. They will know that once upon a time my baby did exist.  

If you have been affected by pregnancy or baby loss, please know that you are not alone. There are people who understand and whom you can speak to in confidence.  
 
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