Vessel Is Me.

DENISE KEKIMURI- SHEPHERD & FOUNDER.

On December 2018, Vessel Is Me was birthed after the book launch of ‘So, What Next? (You Heal, You grow, You help others) a memoir by our founder Denise Kekimuri, her journey after experiencing a miscarriage at 7weeks and thereafter loss of her daughter Keitangaza at 8 months. It tells  the lack of bereavement care in health care sector in Uganda, the lack of mourning etiquette in our society. It has been an important tool in pushing Vessel Is Me’ agenda to get the word out that babies die but there should be a decorum, a system set up to offer care and comfort to the women and couples and their families who experience this tragedy.Vessel Is Me was birthed out of the book tour, as more and more women approached Kekimuri asking for help or support to deal with their emotional and mental breakdowns. 

Vessel Is Me is a non-profit organisation dedicated to improving care for families who have experienced pregnancy loss, neonatal deaths and couples dealing with infertility. We offer peer counselling, professional grief counselling and perinatal bereavement training.Vessel is Me is the only provider of perinatal bereavement support services in Uganda, providing direct emotional support to over 300 bereaved families each year. Our model of peer-to-peer support places us in a strong and unique position to provide hope and understanding to bereaved parents and their families in Uganda.

Vessel Is Me would want to engage in partnerships to carry out in depth research into different levels of how perinatal loss & infertility affects Ugandans, increase public support and understanding of the effects it has on persons that have experienced this and offer emotional support.

Each year in Uganda, there are approximately 40,000 stillbirths (>28weeks’ gestation) This number doesn’t include; miscarriages, newborn deaths or medical termination (birth defects, ectopic pregnancies, moral pregnancies) because Uganda doesn’t issue death notifications for these deaths (<28weeks’ gestation) If all deaths were registered and each woman/couple received a death notification, we would have concrete numbers to show the vastness of this issue. This number would be catastrophic, meaning that miscarriage, stillbirth or newborn death will occur in 1 in 3 Ugandan women in their lifetime.

Our research tells us that grieving parents want maternity staff to demonstrate sensitivity and empathy, validate their emotions, provide clear information, and be aware that the timing of information given may be distressing. Parents also want support and guidance when making decisions about seeing and holding their baby. Sensitivity, respect, collaboration, and access to information is essential throughout the experience of miscarriage, stillbirth or newborn death. Research has shown that parents and their families do not receive quality care and support following the death of their baby.

BEREAVEMENT LOSS TRAINING PROGRAM

Having first-hand experience as a team has helped us come up with a curriculum in tune with the hiccups and missing pieces for any woman or couple who grow through either pregnancy loss, infant loss or fertility challenges from the health care center to home setting to work place and church or society as a whole. This training is teaching on emotional skills as well as pyscho-social wellness.

For couples dealing with fertility, we offer talk peer to peer counselling as well as grief counseling. These are supposed to be provided by the health care system but we have since gathered that most of them are under staffed, over worked and under paid and the ones who do care are those who have gone through a reproductive loss themselves as thus empathized. This led us to train our own angel parents who would volunteer, some have come on board permanently to be situated in different hospitals we have partnered with in our journey thus far. Our goal is having at least 1 bereaved specialist and 1 social worker from Vessel Is Me in 65 referral hospitals in Uganda.

Bereaved parents and couples dealing with fertility challenges have one thing in common, they all want to be heard! They want people to acknowledge their grief, their babies’ anniversaries, say their babies name. We have created a platform for the men/fathers who would be the other half of the healing journey. After having a couple of Therapy Tribe sessions(Women's session) with the women, we realised the number one issue was unsupportive spouses/ partners. the Knights of the Roundtable. The first session was on August 30th 2019(International Bereaved Father’s day) we honestly didn’t expect the turn out we had around 30 men showed up, ready to hear other men speak to them about breaking the myths around P.A.I.L and Fertility challenges. These session was on a Sunday 3pm-6pm. 

The couples gathering because of COVID19 has been online via Zoom meetings, we shall have Facebook live sessions to discuss in-depth conversations. 85% of couples who go through P.A.I.L and couples dealing with fertility challenges separate or divorce because of undealt grief. These issues of mental health and emotional wellness sip further into the individual being causing identity crises and poor mental health.

Breaking the mould and the silence around reproductive trauma cuts across all cultural and religious boundaries. Vessel Is Me is the voice of reason, enlightenment and awareness. 

In Uganda where we are based, these are taboo topics. They are part of the conversations that society forgets to have. We have purposed to inform society, women and couples going through this experience, by sharing educative pamphlets on reproductive health, rights and mental health and hosting UN-Masked episodes during key awareness weeks in our events program, attending TV and radio interviews to discuss the stigma around reproductive injustice.

From my book tour, many women where reaching out to me asking for help, many needed professional help but didn't know where to go, others needed talk therapy and some just needed a spa date so i purposed to spend my earnings from book sales to reach out to them, then it got bigger than me. I wasn't able to sustain the support group meetings, therapy sessions, spa dates etc by myself so other women came on board who had similar struggles and together we decided to formalise it and come up with structures that will stand the test of time. Our board of Advisors also has women & a man who have gone through these experiences, our goals and mission is shared across all fronts.

As i mentioned earlier, our team is composed of women who've lost their babies, trying to conceive and dealing with fertility challenges, this has placed the project close to home. We know first head what each of these angel parents/ couples are going through, we know that "good intentions" people around them might have cause more pain than good. Society has refused to provide a safe space for us(angel parents, couples dealing with infertility) to mourn, vent and grieve without judgement. This is one of our goals as we amplify our cause, we also walk this journey with you.

I don't think am well positioned to deliver this project, i know that someone has to step up and have the uncomfortable conversations, call out the mistreatment of women who for no fault of their own have been ostractized and isolated, as well as the men who have no safe haven to be vulnerable to be human. My team and I have opened up our lives to create a safe haven: a platform where we can be human and extend grace and kindness to one another.

This project requires a deeper level of emotional intelligence that society can't collectively adhere to. I have walked this journey, it has led me to a point of understanding not to judge anyone because the battles that we are each facing, are not equal. Empathy is key in our work. If one lacks that, they won't get far. Like John Lennon sang, "All we need is love."

Vessel Is Me has mastered. Being angel parents ourselves, we know the days that are sensitive, the months that will have to double down on comforting and letting the angel parents know we are available for them. We started a program called Therapy Tribe, which is support group from bereaved parents and couples dealing with fertility challenges. On March 2019, we had our first gathering, only women showed up. No surprise there. We started at 6pm and ended at 11 pm, women were looking for a space to pour out their hearts and just be heard. They felt supported, they had a friend, they were heard. The next session was moved to a Saturday 3pm – 7pm, we needed ample time to listen to each woman and identify the help they needed, Most needed encouragement, prayers and therapy sessions. Therapy Tribe showed us that these women needed to know that they were not alone in this journey. Some women bonded beyond the group sessions, to become each other’s walk withs. What is a Walk With? The grief faced by most of these bereaved parents isn’t linear, it’s messy, it’s complicated and its part of our everyday life. 

I don't think of myself as a leader, more of a shepherd. I believe we each have a path placed before us, mine is to set people on the path of healing, begin the journey the rest is up to them. The model I have instilled in our team is walking with our people, not dragging them or walking ahead. Show them the way as you walk with them. That's the end goal to heal, grow and help others. When i lost my 8 month old, I knew i didn't want any other woman/couple to feel like i did and i purposed to just go out and make as much noise as possible. I wrote a book. I am writing other people's stories now so that in the future our children don't say, "no one ever told us."

Not being able to speak about one's pain is what has created a disconnect in our world. People become inhumane, that's why you will find many medical practitioners who a aloof, they have reset their minds to not feel yet that's what separates us from the animals,moral discernment to know better and do better. That's what Vessel Is Me is creating a way of life, where rather than hide or isolate, people can be give support, knowledge to feel their pain and grow through it. This is core of us, EMPATHY. All people want is to be heard, acknowledge my pain and if need be point me in the direction of someone who can help me through this maze. Don't treat me like an animal because my loss makes you uncomfortable;that's what we are disrupting in calling out the system that has been set up to ignore our pain. 

Mental Health is our biggest challenge as humans, we have totally negated our soul well being, Vessel Is Me is here to say, " You soul matters" "Your pregnancy/baby Matters" "You matter" "Your grief is valid" Psycho-social & spiritual wellness are key to our physical bodies. 

There's no health without mental health.

As i have mentioned earlier, society has castigated and ostracitzed women/ couples dealing with perinatal loss and reproductive trauma out of lack knowledge, women have carried this burden heavily.In June we held a Men's Health month, to raise awareness around men & reproductive health on our social media platforms. We posted on how poor sperm morphology, sperm motility & low sperm count affect health of the child causing about 60% of miscarriages(something that many women have blamed themselves for) our inboxes were full, mostly men asking for more information, where to go for semen analysis. Women sent in paragraphs after paragraphs on how they had been mistreated and cast out of their martial homes because they couldn't conceive or had given birth to a child with autism etc. This has pushed us to continue sharing information on reproductive health of both male & female. We had previously focused more on the women's conditions endometriosis and PCOS but we have since have to add men's health into the brochures to distribute in hospitals and clinics etc.

We have partnered with two urologists to assist our men further, the feedback we are getting is that more men are coming in because of the information we shared in that month June 2020.This shows a true sense of my people perish for lack of knowledge.

Currently: 321,001

Within one year: 500,000

Five years: 3,000,000

Our biggest goals is that we are getting tagged in more posts when a woman/ couple post their story on the social media platforms. We are the go to centre to help with all things perinatal loss and infertility, this wasn't there 2 years ago. We are slowly being recognised, awareness is our core goal. 

More people are talking about their losses, struggles. Our therapy team is getting to see more and more people. During this Covid19 season, we have a lot of cases of domestic violence which has pushed us to look into safe houses for our women to heal and grow without the weight of an unsupportive partner. We have also moved online which has increased the scope of people we are walking with, we have people tuning in from all over the world, Ugandans aboard. This has encouraged us to have an online platform,  telemental health sessions.

UN-Masked series where our stories are shared via video has ventured into writing a series of books across the East African countries to explore the cultural impact this has on our societies. We have 3 different partners in Tanzania, Kenya and Rwanda, organizations dealing with the same stigma & trauma, together we shall be pushing the policy makers to implement laws that support perinatal loss & infertility in our region.

1. Lack of consistent funds to keep our activities and projects running simultaneously. A lot of the work in Vessel is Me caters to the mental well-being of our angel parents and couples dealing with fertility issues. This means that ideally each woman/ couple should have a minimum of 8 therapy sessions, upon discharge from the hospital, to help them transition with their new normal, sadly this isn’t as available because psychotherapists need to be paid. What we offer now for free and consistently is peer to peer counselling.
2. Building a centre of excellence for perinatal loss support,infertility has made us the enemies to society although many people use our platform and contact us, the older generation are stuck in their cultural norms of “bedroom matters stay in the bedroom, inheritance of wives or abandonment of barren women etc.” we are disrupting a system, trying to rebuild another but without the foundation of the cultural or religious constraints.  Having the uncomfortable conversations for most of our team members has seen a lot of friction amongst families. In Uganda, this is the first organisation that is dealing with the topics that are core to the family unit and affecting nearly 50% of our population. In the era of internet, it would easy to copy and paste the western world models but that wouldn’t apply for our African setting. Having to set up our own training curriculum, support groups and face to face sessions has taught us that not one shoe fits all

1. We are sourcing funding from companies outside of our borders to partner with us not just give but to walk this journey with us so that we can implement our goals within the 5 years. The obstacle of mental health funding is lack enough knowledge, so we have started  Mental Health awareness Wednesdays to discuss in detail with professionals the depth and effects of not paying attention to this part of our human being.

2. Information! Information! Information! thats how we beat the stigma and break the cultural norms. Science as explained what goes on in our reproductive systems, we are breaking that down into simpler language so that even the uneducated can grasp that painful periods are not a right of passage to womanhood but that she needs to go she a fertility specialist immediately as this could lead to her inability to conceive later in life. Educate the masses.

3.We trying to partner with policy makers in the government to implement laws that favour our people i.e. couples dealing with infertility and bereaved parents. 

1. Still A mum Kenya

2. The Joy foundation Tanzania

$ 1,443,250

We need the funds to reach more people and grow our 3 projects. Currently we can only help a few people within Kampala but we keep receiving requests from the rural areas, women being battered and abused due to reproductive injustice yet we can't reach them. We also need to implement many laws to protect our own but these partnerships need financing. There's not enough funds we receive from the book sales and personal donations from our well wishers. The Elevate Prize will definitely push us so much closer to accomplishing our goals.

We are looking for an organization to stand with us in solidarity.  We are trying to build our own table, to set our own rules to serve a group of people who society has chosen to ignore and keep silent about. Our needs are to be heard, to offer comfort to those in sorrow and healing to the emotional and physical pain that society has swept under the rug. Our hope is to build this table with you. Don’t be afraid of our pain, stand and listen to our stories and believe them, stand and let everyone see you standing with us, stand and don’t tell us what to say or how to feel or what to do. Be willing to be part of our family, to form a deeper relationship and break the deafening silence around P.A.I.L, fertility challenges and perinatal loss mental health in Uganda.

UNFPA Uganda handles the maternal & safe motherhood branch but they don't include mental health in their mandate. This partnership would ease our reach into rural areas

 Mariposa Trust International: being the first international charity that deals with perinatal loss would increase our knowledge base as well as skills on how to structure and program our government policies like the employment Act, insurance Act.

Microsoft: we would like to build a country wide and regional database, actual statistics on the effects on society, individuals, employers, families. This will help us forge a way forward on effective treatment methodologies, setting up structures that support maternal & paternal perinatal health from conception till infancy to reduce mortalities of mothers & their babies.

CEHURD: develop new reproductive rights that include infertility challenges(primary & secondary of both genders)