Finding Purpose: the Zuri Nzilani Foundation

Written by Ashley Wayua, Mother of Zuri and Founder of the Zuri Nzilani Foundation

When my husband Ian and I learned that I was pregnant, we were excited and looked forward to becoming parents. My pregnancy was bliss until the 7th month when I began swelling really badly. Initially, I just blamed the swelling and my discomfort on all of the walking I was having to do at work.

Ian and I were surprised when I was diagnosed with preeclampsia and admitted to the critical care room. My body started to fail me. My major organs began failing. My liver and kidneys were deteriorating. Since my life and my baby’s life were in danger, our daughter Zuri was born at 30 weeks gestation, via emergency c-section, weighing 1.2 kgs (2.6 pounds). Thank God, Ian was with me throughout the process, holding my hand. Zuri’s cry was the most beautiful moment. Ian escorted Zuri to the NICU while I was still in the operating room. zuri 1

In the NICU, Zuri had a brain bleed, became sick, and was diagnosed with necrotizing enterocolitis (NEC). She required IV fluids, caffeine, blood pressure medication, blood transfusions, and would often vomit. I remember one day Zuri was so sick – she was dying – I sat there as her oxygen levels continued to drop. Her skin color changed and she became completely dark black due to a lack of oxygen. Fortunately, the nurses resuscitated her.

The next day Zuri required intubation. I could feel her slipping away. I talked to Zuri as I watched her cry and smile back at me. The nurses told me that Zuri was in a lot of pain. A few minutes later, Zuri started to desaturate and I was asked to leave the room. On April 25th, 2018, on her 49th day of life, Zuri succumbed to NEC.

There is no pain that compares to losing a child. There are no words to even describe the loss of a child. There isn’t even a name for parents who have lost a child. It is utterly crushing and heartbreaking.

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Prior to Zuri’s diagnosis, we had never heard of NEC. We didn’t know that Zuri was at risk. We were so frustrated and helpless because we felt like there was nothing we could do to help our child. Amidst the devastating pain, Zuri has given us purpose. In honor of our daughter, I started the Zuri Nzilani Foundation, to create awareness on preeclampsia, prematurity, and infant loss here in Nairobi, Kenya.

Through the Zuri Nzilani Foundation, we are committed to helping families who are struggling, just as we were. We provide educational training to caregivers and mothers, conduct research, fundraising, and advocate for better maternal healthcare and social support.

Just three months after Zuri’s passing, we were pregnant again. This pregnancy, I experienced preeclampsia once again, as well as placenta abruption. Our second daughter, Amani, was born at 31 weeks weighing 975 grams. We were terrified that Amani would also develop NEC. Thankfully, she didn’t. Amani is now home with us, thriving, achieving milestones, and almost two-years-old.

We are grateful for the Zuri Nzilani Foundation as it has allowed us to keep Zuri’s memory alive in our hearts and through our work every day.

To learn more about the Zuri Nzilani Foundation click here.

Do you have a NEC story you want to share? Tell us here.

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