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The godmother of preterm babies in Ghana

Call her the godmother of all preterm babies in Ghana and you won’t be wrong. For over a decade, Edith Uyovbukerhi (Don’t bite your tongue trying to mention the surname, I still don’t get it) has supported and advocated for babies born prematurely in Ghana and Africa.

She is the Co-Founder and Executive Director of LittleBigSoulsGhana, an international charitable organisation, which advocates on the serious issue of prematurity and the reduction of the terrible rates of death and disability for preterm babies born in Africa.

Edith’s journey to advocating preterm babies kicked off with a mishap. Her daughter, Tejirie, who was born prematurely passed after 16 days at the neonatal intensive care unit.

Throughout this month, we are celebrating the strength and tenacity of mothers and there’s no better person to start with than Aunty Edith as she’s popularly known in NICU circles.

I (NS) had conversation with her (Edith) recently and below are excerpts, read on…

NS: When did you start LittleBigSouls Ghana?

EDITH : LittleBigSouls Ghana was formally set up here in Ghana in 2010. But prior to that, we operated from the United Kingdom (UK) and provided support to units and families here in Ghana.

NS: What was the motivation behind starting the organisation?

EDITH: LittleBigSouls was founded in 2003, following the tragic and very avoidable death of my preterm daughter born at 31 weeks, in a major hospital in Accra. Her death could have been prevented if the necessary resources had been available in the unit in which she was born. She is the reason for what we do and the source of my passion. We set up LittleBigSouls in her honour and in her memory and have committed ourselves over the years to working to level the playing field for the care of premature babies in our region, so that ultimately, your location of birth should not determine your chance for survival.

Our aim is that through the work and programmes of LittleBigSouls Ghana, we can give every baby we connect with a fighting chance to survive, thrive and grow. We are blessed to have grown a wonderful team of volunteers who connect to our cause and have great hearts for preemies and who have made it possible for us to do so much more.

NS: Give us a brief history of your own NICU experience.

EDITH:  I was pregnant with my third child, and I had a healthy, problem-free, wonderful pregnancy up until 23 weeks. To keep a long story of losing amniotic fluid from 23 weeks of pregnancy, admission at one of the major hospitals in Accra, having a medical cerclage, eight weeks hospitalised bed rest, and numerous scans short, I had a placenta abruption on the evening of May 13, 2003. It created an emergency where I had to be rushed into the operating theatre for a caesarean section. My beautiful but tiny precious daughter, Tejirie, was born with an Apgar score of nine, and no medical challenges except for her early arrival. That begun our NICU experience. She was on admission in NICU for 16 days until her death. All NICU mums would gather in the small anteroom to the NICU on a bench and we would all softly be expressing breastmilk for feeds for our babies. I was on admission for five days from my baby’s birth and started visiting the NICU from day two. That first NICU experience is a tough one and so many emotions come to play. The fear, anxiety, unfamiliarity of the space and how to navigate it can’t be described unless you have experienced it yourself. I tried to focus on my baby but the protocol in the unit at the time was not parent-friendly and that made it hard to be anything but an onlooker preemie mum. After I was discharged, I would be at NICU throughout the day to be available for feeds. In those times, you form tenuous bonds with other preemie mums because of your shared experiences. You begin to see the hospital and NICU as “home” because of the amount of time you spend in and around it. When you are in the NICU, the sights and sounds slowly become part of your world. What startled or frightened you on day one, becomes normal by day six. Things like all the equipment, the terms the care teams use, the lighting, and the bleeps and alarms from the monitors. That is what happened to me.

On Day 16 in NICU, my baby was given her first feed around at 7.30 a.m. and I was very happy as my baby had increased her feeds and I was told to express more ounces going forward. I had also spoken with the doctor during their rounds and been told that we would hopefully be discharged in a matter of days. I went out to check on my other children as we lived close by the hospital and returned at the lunchtime and noticed that my baby was no longer in the incubator she had been in since admission. I did not panic initially as I assumed that she may have been moved to an open cot given the fact that she had increased feeds and we were close to discharge. As I was trying to find out where she had been placed, a nurse came and asked me to come and sit at the chair at the nurses’ station as the NICU in charge wanted to speak with me. They proceeded to tell me that a nurse had been giving my baby her feed by syringe and that there was an emergency with another baby which meant she had to put my baby back down to attend to the other baby but that when she came back to resume the feeds, they found that she had asphyxiated. She had basically choked on the milk. I cannot describe the moments after that here, but you can imagine how devastating and traumatising it was. I eventually walked out of NICU without my baby in my arms.

NS:I can’t imagine your pain after losing your child…

 EDITH: Baby loss at any age or any time is not a little loss. It is devastating because you not only mourn the loss of the tiny child you birthed, but you mourn the many many tomorrows you’ll never have and the many what would have been. The first few weeks were the hardest of my life. I was a mother to two other wonderful children, four and two years old, and I couldn’t bury my head in the grief I was feeling because they needed me. I had to be strong, and I was told that so many times by so many well-meaning people. To be strong. To put this all behind me. To find joy in the fact that I already had two children. Did I know I could have another? Those kinds of comments. I tried to be strong, tried to get back to normality, back to work and all, but it was a struggle. Over the months that passed, I chose to find meaning in our loss. First, we wanted to validate our precious daughter’s life, to say to anyone that cared that she was wanted and loved, that she was here on this earth even if it was only for a few days and that her life and her presence mattered to her family who loved her. Then secondly, we wanted to make sure that other families didn’t go through what we had been through and that started not just the idea of, but the real work of LittleBigSouls. Tejirie would have been turning 19 this year and there is no day that she doesn’t cross my mind in some way.

From remembering the events around her birth and my NICU experience to seeing her face in tiny preemies we regularly visit at our beneficiary units, to wondering as I look at my other children who she would have looked like or what feature of mine or her dad’s would she have had. I see her as our angel, watching over us and keeping our passion for preemies alive and active. I am so blessed to have been chosen as her mum and my experience as a preemie mum gives me such an edge today when I meet new mums in NICU because I am able to speak, encourage, care and support from a place of knowing. I will always be an angel preemie mum and I wear that badge with honour. My prayer is that while we fight for preemies to survive and thrive, I can also bring closure and peace to other mums who have suffered the loss of their beautiful angels.

NS: What is the focus of the non- profit?

EDITH: LittleBigSouls Ghana’s focus is advocacy on the serious issue of prematurity and the reduction of the terrible rates of death and disability for preterm babies born in Africa through our programmes which I will list below:

Equipment Donation Programme, which allows us to donate critical lifesaving neonatal intensive care equipment such as incubators, phototherapy machines, respirators etc. to beneficiary hospitals. We also donate other non-critical equipment such as weighing scales, pulse oximeters, thermometers, televisions, washing machines, bedding and furnishing etc. to beneficiary units.

There’s the Parental Support Programme where we provide a great support system to parents of preterm babies. We give out care packs with essential everyday items such as preemie diapers, wipes, toiletries, preemies, and small baby clothing are given to mothers with babies in NICU, and sometimes we provide financial assistance to desperate families. We are here to provide information on how to best care for their babies, with specialised support on needs such as lactation, baby developmental milestones etc.

Under the NICU Connect Programme, we are actively encouraging Kangaroo Mother Care (KMC) and establishing or refurbishing KMC units in hospitals. We provide beds and linen, chairs, televisions, refrigerators, ceiling fans and DVD players to mother’s hostels and KMC units to establish continuous KMC and make the mother’s stay in NICU and KMC comfortable. Awareness programme is a big part of what we do. There are so many cultural misconceptions about babies born too soon in our region which are unhelpful in helping babies to survive, thrive and grow. We believe strongly that as we share information on prematurity and educate the public, we can drive out ignorance on the subject and open up channels that help us find the necessary solutions that benefit precious preemie lives.

LittleBigSouls runs regular in-hospital trainings locally. The training topics are relevant and NICU centred and delivered within the units to allow for maximum participation and practical demonstration.

NS : Name some of your beneficiary NICUs and what you have done at these units.

EDITH:  Our mission is to work with any unit that needs our support. In this fight for preemies, we only win as part of the continuum of care made up of hospitals/health units, parents, and civil society/non-profit organisations like ourselves all coming together and doing our bit to ultimately provide the best care for preemies in our region. No one part can achieve this alone. LittleBigSouls has formed beneficiary partnerships with some units so that we can focus our support in a targeted manner that meets the needs of the unit towards the overall goal of saving preemie lives. We are proud of the relationship we have with several hospitals and healthcare centres across the country. Tema General Hospital NICU, Korle Bu NICU, Ridge Hospital NICU, Bisease Polyclinic, KATH NICU, St Patrick’s Offinso NICU, Tarkwa Municipal Hospital NICU, Efia Nkwanta Hospital NICU, Koforidua Hospital NICU and the list goes on.

We have supported many other units on a one-off basis such as Dodowa, Keta Municipal, Police Hospital (we will be working with them this year on a beneficiary basis. We have donated neonatal intensive care equipment (incubators, phototherapy units), and general equipment (Televisions, refrigerators, weighing scales, pulse oximeters, medical consumables such as cannulas, syringes, plaster, nasal prongs etc.) We have carried out training of NICU care teams in some of these units, we support parents regularly with care packages at every one of these units. We have undertaken the refurbishment of some of these units and the KMC centres associated with them. This is an ongoing programme for 2022 with the refurbishing of Tarkwa and Tema KMC units completed. The NICU care teams know they can call on us to assist with medication, paying bills for parents who are unable to, lactation consultation for mothers who are having difficulty breastfeeding and sadly, with bereavement and baby loss. LittleBigSouls has a room at our offices where parents who have lost precious babies can come to sit and counselling is available on request.

NS: What are some of the changes you will want to see in NICUs across Africa, especially Ghana.

EDITH:  Child centered care with much more parental involvement and access, better equipped units with some individual bays for some of the tiniest sickest babies, depth in NICU care teams with many more doctors being supported to specialise in neonatology and a big focus on developmental care of the babies in NICU. This is important to me. Studies have shown that dimmer softer lights, lower sounds and respectful care for these tiny babies can improve their outcomes. It doesn’t cost anything for us to be less loud in NICU and to adjust the environment to be conducive to babies that would otherwise be in the womb environment. Another area that we want to see improvements in, and where we work to be the change we want to see is the adoption of continuous KMC in all units as a transition towards graduating the NICU.

NS: Raising funds to finance projects is difficult. How have you been able to do this consistently year after year?

EDITH: Raising funds is hard. Whilst people seem to appreciate the work we do, it does not easily translate into giving. We raise funds by directly contacting individuals and organisations and via all our social media platforms. We are blessed by a small but consistent number of people who believe in what we are doing, who see our work and appreciate the effort that goes to making that difference. We are so grateful to them for supporting the work we do. They are lifesavers. We as a family also fund LittleBigSouls Ghana. We would be so grateful if some corporate supporters would join us. They could adopt us as part of their corporate social responsibility or as their charity of choice. Sometimes when we approach corporates, we hear that our cause isn’t aligned to what they are focused on for the year e.g. education, or girl child or something else. But I ask this, in the end, isn’t humanity at the centre of every CSR focus? What speaks more to humanity than our cause, the survival, care and growth of tiny preemie lives who otherwise would have been lost.

Profile

Edith Kpodo-Uyovbukerhi is the Country Director of Harley Reed Ghana, a knowledge, advisory and assurance organisation; Co-Founder and Executive Director of LittleBigSouls Charitable Foundation, and Founder, Strands of Pearls International, a women’s leadership and development organisation.

She is a chartered certified accountant and a Fellow of the Association of Chartered Certified Accountants and a member of the Institute of Chartered Accountants Ghana. She holds an MBA in Finance from Stirling University, Scotland and a bachelor’s degree in Accounting and Finance from Brighton University, UK. She has wide experience at senior executive management level spanning over 29 years in blue-chip companies in the UK and Ghana. Edith serves as a director and member of the Advisory Board of the African Women in Leadership Organisation (AWLO). As a strong advocate for mentoring young women as a means of ensuring a stronger next generation of African women who lead, she co-founded Path of Hope, to develop, empower, support and inspire a group of millennial ladies towards anticipating, leading and celebrating positive change and development in our society, our country and continent. Edith was involved with trailblazing Innovation Prize for Africa initiative, serving as a judge for the IPA award process for several years. She sits on the Advisory Board of ShEquity, an organisation whose purpose is to provide smart and sustainable investments for African female entrepreneurs and innovators and serves on the Board of Old Mutual Ghana. She was named ambassador for the textile manufacturing giant, Vlisco, in Ghana in recognition of her life and work. She is married and has three wonderful children.