4Damani - Breaking the silence on pregnancy and infant loss in JamaicaMonday, October 21, 2019
“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That's how awful the loss is.”
— Jay Neugeboren
AS parents we expect that our children will outlive us. Thoughts of raising happy, healthy children fill our heads from the moment we experience the first flutters of pregnancy in the womb. Even with pregnancy complications and premature births, nothing ever quite prepares us for our children dying before we do. Yet every year about 2.7 million babies die during the first 28 days of life globally, while another 2.6 million babies are stillborn.
An even greater number of foetuses die before the 20th week of pregnancy, at which stage they are referred to as miscarriages instead of stillborn, and many of them are not even recorded. This leaves millions of parents grieving over empty cots and trying to pick up the pieces after losing their babies. It's a goodbye that's often said in silence.
October is internationally observed as Pregnancy and Infant Loss (PAIL) Awareness Month, while October 15 is observed as Pregnancy and Infant Loss Remembrance Day. While several countries have officially recognised these dates, this year was the first time they were being officially acknowledged in Jamaica. The decree was made by Governor General Sir Patrick Allen, after being lobbied by a local 'Angel mommy' who started a support group and blog in her son's memory.
Her name is Crystal-Gayle Williams, and her son Damani Joshua Miguel Williams would have been just over a year old today. But after being born prematurely at 24 weeks due to complications from pre-eclampsia, little Damani only lived for two days in the NICU before his spirit left his body.
“No parent wants to hear that their child might die. No parent wants to watch their child suffer. I felt guilty for wanting him to fight even though he looked so tired. His poor body had had enough. At that moment I understood what being a parent was, I couldn't be selfish anymore,” Williams said.
A month later she founded 4Damani, and set up a blog 4damani.wordpress.com as a platform for other grieving parents to share their stories.
“It was born out of my own tragedy,” she told All Woman. “After going through the whole experience and suffering through post-traumatic stress disorder, and just seeing how unmentionable it is in Jamaica, I just started doing research to see what support was out there. I stumbled on the baby loss community and realised there wasn't an established one in Jamaica.”
Williams lamented that there is a lot of stigma surrounding pregnancy and infant loss in Jamaica, and she discovered that many parents were suffering silently. She wanted to break that silence and have persons share their experiences and begin healing.
“Out of that I also formed a support group on Facebook and Whatsapp,” she said. “It really is a judgement-free space for people who are struggling to be able to talk about it and receive support.”
She shared that it has been mainly grieving mothers who have used the platforms — something that she hopes will change soon.
“The women are struggling, but I feel like it is a bit harder on them because they are the ones who are expected not to show their emotions. They are supposed to be strong for the women. But really this is something that affects the entire community. It affects relationships, families, and even the workplace. People have to return to work after they experience a loss, and it's a totally different environment.”
“I sent a proclamation and a letter to the governor general around January, and I kept checking up on it. I wanted it to become something that was acknowledged in Jamaica, because based on our statistics a number of people are suffering the effects of neonatal and infant deaths,” she said.
According to the Ministry of Health and Wellness, there were an estimated 524 stillbirths and 649 neonatal deaths (when a baby dies in the first 28 days of life) recorded in Jamaica's hospitals in 2017. That means nearly 16 babies out of every 1000 births were stillborn, and another 20 died before they were 28 days old. Miscarriages are not routinely recorded in Jamaica, so the numbers are even higher if the losses that occur before 20 weeks of pregnancy are taken into account.
Since the proclamation was made by the governor general at the beginning of the month, a series of events were arranged by Williams, along with the Partnership for the Promotion of Patients' Rights in Maternal, Neonatal & Infant Health in Jamaica (PPPR/MNIH).
Last Saturday there was a 'Yoga for Healing' session, an aspect that Williams wanted to have included because of how it helped her personally.
A 'Wave of Light' event, which included a candle-lighting ceremony in remembrance of the pregnancies and infants lost was also held on October 15, forming part of a wave of candle-lighting ceremonies taking place around the world at the same time. Bereaved parents went up during the wave of light and said their babies' names.
While being happy that she has been able to help many other grieving parents and receive help while she continues to grieve, Williams hopes that many more parents will open up about their grieving so that they may begin to heal. She encourages others to be sensitive to the needs of parents who have lost their children.
“It's a very traumatic experience that I wouldn't wish on my worst enemy. Losing your child is the worst grief someone can experience. It takes a piece of your heart when your child is gone, and you have to live with that every single day. People expect you to move on. They expect you to be fine after a certain time has passed.”
Even those parents with other living children still need room to grieve the children that they lost, she added.
“People often think that having another baby will make it better, but from the women I have seen go through another pregnancy after a loss, that is untrue. I know women who, even after over 30 years of losing a child, you ask them how many children they have and they will still tell you about the child that died,” she said.