Hand to Hold's Official Blog: Written by Parents for Parents

You Are Not Alone: Fostering Prematurity Awareness Around the Globe

In meeting many NICU parents, I’ve gathered that not one of us would wish the NICU experience on anyone after having gone through it. It is terrifying and so destabilizing on multiple levels that one wouldn’t wish it on their worst enemy.

sweet kangaroo care malawi prematurity awareness

Kangaroo care is an *immeasurable* value in providing care for premature babies. Photo Credit: World Prematurity Day

Can you imagine, though, what it would be like if your baby had to share an incubator with another baby due to space issues at the hospital? That if the power went out your baby would be subject to being disconnected from life support unless you were close by and could reconnect the wires? Imagine what it would be like when by American standards, a “feeder-grower” could lose their battle due to a simple issue having to do with the hospital’s resources or cleanliness.

Fathoming what it’s like to experience prematurity or complicated birth experiences in developing countries (or even some middle income countries) is extremely difficult.

Annually, 15 million babies are born too soon around the globe. That is one in ten babies on average. Of those 15 million babies, 1 million will die. Preterm birth is the number one cause of newborn (defined as the first four weeks of life) mortality, and is second only to pneumonia in children under five. While in America, a 24-weeker has a 50% chance of survival, in low-income countries babies born at 32 weeks have the same percentage chance of survival. Additionally, the World Health Organization surmises that even the most low-cost care could drastically improve survival rates in developing countries. Kangaroo care, corticosteroids given to mothers before birth, training for health care workers on how to revive premature infants and basic supplies like incubators and clean blankets are all things that could drastically reduce the rate of infant mortality due to prematurity in the developing world. (Blencowe et al., 2013)

Aissata Sacko AMCGUINEA prematurity awareness

Aissata Sacko, founder of AMC Guinea and former preemie

While researching this article, I found this incredible map in which parents around the world have shared their stories of prematurity and their sweet babies’ lives. In exploring it, I came across a service provider affiliated with the Healthy Newborn Network who is currently running a nonprofit to support NICUs in the Republic of Guinea. Her name is Aissata Sacko, and I reached out to her to ask her a few questions about her work, and what inspired her to start AMC Guinea (Assistance to Maternity Centers of Guinea– you can find them on Facebook here). Aissata was kind enough to tell a bit of her story and what motivates her, and also to provide a narrative of what the NICU experience is like in West Africa.

Kara: Hi Aissatta! To start, can you tell us a little bit about your organization AMC Guinea? Where is it located, what does it do, and what is your role within it?

Aissata: AMC Guinea is a non-profit organization with a 501(c)(3) status, headquartered in the state of Maryland, USA. I am the Founder and Chief Executive officer of the organization.

AMC Guinea (Assistance to Maternity Centers of Guinea) is a nonprofit organization founded in 2012 after revisiting personal experiences I had about prematurity.

Kara: What about those experiences brought you to doing this sort of work? What values do you have that you try to express through this work?

Aissata: I was born a premature [infant] in Guinea, and back then there were no resources available to my parents, but I miraculously survived. My mother used to tell me how difficult it was to care for premature babies then as there were frequent power outages, lack of incubators (or none), and the lack of skilled nurses and doctors.

sweet kangaroo care india prematurity awareness

Photo Credit: World Prematurity Day

My mother said that they were not sure if [I] would survive [as] she had lost three babies before me, therefore they only started taking my pictures when I was almost learning how to walk; no pictures of me in the NICU or after that because of the skepticism.

Then, one of my daughters was born premature as well [at 27 weeks], at Holy Cross Hospital in Maryland, in an extremely different hospital setting. After seeing the attention and care provided to her at the hospital’s NICU center, I realized that such facility should be available to all, especially in developing countries.

Kara: How needed is your work in Guinea? Can you give readers a sense of what it’s like to have a premature baby in Guinea? What are hospitals like? Can people easily access care/help?

Aissatta: Since charity begins at home, I started doing some research on my country and came to the fact that even though we now have some qualified nurses and doctors,

prematurity awareness

Photo credit: UNICEF/UNI180580/Galli

Guinea only has one NICU for premature babies and the center is so poorly equipped that babies have to share incubators. It is in light of this that I decided to start AMC Guinea to create an awareness campaign about preventing preterm births, to provide training to medical staff with the help of our partners, and to find adequate and basic equipment for the NICU center to save premature babies in Guinea.

Our organization is still new, but we are working on implementing the different ways of reducing preterm births, and the ultimate need for more NICUs to be built across the country. Our work is really needed in Guinea as it is classified as a Third World country, and the health care system has been severely affected by the recent Ebola outbreak, making it difficult for the government to handle all the areas of development. [Incidentally, this week the last case of the Ebola virus (in a 3 week old infant) was healed, potentially making Guinea Ebola-free after a long and horrific struggle lasting over a year and causing numerous deaths]

Kara: What are the goals of AMC Guinea in moving forward? What do you foresee happening through your work?

BANNER AMC Guinea

Photo Credit: Aissata Sacko

Aissata: Like any Third World country, having a premature baby in Guinea is a difficult and scary experience because of all the problems cited earlier. Parents are always skeptical about their newborn’s survival, but the government is really trying to improve the health care system amidst the numerous issues it faces. We want to participate in the development process in our country and we are [hoping that] readers will help AMC Guinea build more NICUs to allow pregnant women to easily access low cost and adequate prenatal care in Guinea.

Our ultimate goal is to work with the Health Department of Guinea on building more NICUs, facilitate access to clinics and hospitals, train the health care staff, educate women about prenatal care at the different stages of pregnancy, and teach parents on how to care for premature babies. We need donations of: any medical equipment for NICU or Maternity [wards] whether new or used, including incubators, birthing tables, birthing beds, Dopplers, baby warmers, prenatal vitamins, first aid kits, etc.

Kara: Thank you so much for interviewing with me, Aissata. It sounds like you’re doing incredible and important work.

Aissata: Thank you for your willingness to help us spread the word of awareness about preterm births.

Talking to Aissata, I got to thinking about the end of my son Elliott’s NICU stay. I was about halfway through a book that was my crutch throughout our experience in the NICU: When Things Fall Apart, by Pema Chodron, which addresses how to understand and cope when you feel the world around you is crumbling. In the book, Chodron discusses the meditation practice of “tonglen”. In tonglen, the goal is to develop two notions: self-compassion, and empathy for others who are suffering.

Through the practice of tonglen, Chodron writes, we can access the core of ourselves, and feel it in connection with countless others who are also suffering. She says that

In fact, one’s whole attitude toward pain can change. Instead of fending it off and hiding from it, one could open one’s heart and allow oneself to feel that pain, feel it as something that will soften and purify us and make us far more loving and kind.”

prematurity awareness

Holding sweet Elliott in the NICU, a couple weeks before discharge. Photo Credit: John McGibbon

I practiced this meditation as I would hold Elliott skin to skin in the PICU. At first, I tried to breathe in his suffering and breathe out healing. As I grew stronger in my ability to meditate, I expanded to myself, my husband, and eventually the circle of my meditation contained everyone in the room we were in.

Eventually, it came to me that all around the world families were coping with prematurity and the hospitalization of their babies. That in that very moment, around the globe, other moms and dads were holding their fragile babies skin to skin. Other moms and dads were grieving the loss of their babies, or the hopes that they’d once had. That in many cases, families didn’t have the same access to medical care that we are lucky enough to have.

I realized that in many ways, our shared suffering with families, mothers, and babies around the world might be the strongest thing that truly connects us, and we should seize on that understanding and connection, even if it is through pain, because it is the one thing that will help us move towards eradicating premature birth and infant mortality around the world.

Many many thanks to Aissata Sacko and AMC Guinea for sharing their story for this article. LOGO

Reference: Blencowe et al. (2013). Born too soon: the global epidemiology of 15 million preterm births. Reproductive Health, 10(Suppl 1): S2.

Kara Wahlin About Kara Wahlin

Kara (CA) is a marriage and family therapist/art therapist located in southern California. Since the preterm birth of her twin sons Elliott and William at 26 weeks and the loss of William at six days old, she's made it her mission to try and use her skills as a therapist to reach out to help, empower, and nurture other families going through the NICU experience. She loves art, exploring, literature, music and doing wild and wooly projects with her son and husband. You can learn more about her on her website, NICUHealing, as well as her personal website. You can follow her on Facebook or Twitter.

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