We’re thrilled to share some exciting news at Hope for HIE—our Peer Support Mentor program continues to grow globally! We are proud to welcome Julie Ndung'u, our newest Peer Support Mentor and HIE mom. Julie is based in Kenya, strengthening our ability to support families around the world who are impacted by HIE.
Adding another international mentor is a powerful reminder that HIE knows no borders, and neither does our community. Families everywhere benefit from connection, understanding, and support from someone who has truly been there. Our mentors bring lived experience, compassion, and hope to parents navigating some of the most challenging moments of their lives. Learn more about Julie, her family, and her journey alongside daughter.
On November 24th 2018, our beautiful baby girl Eliana was born after a long and difficult labour and delivery. As soon as she was born, I knew something was wrong. She was quiet and motionless. The next seventeen minutes were spent resuscitating her and when she finally opened her eyes there was still no cry and she was seizing. Unfortunately, the hospital did not have a functional NICU and she was transferred to another hospital. At this point, we were told that she had suffered from severe birth asphyxia, a term we were hearing for the first time.
The next morning, I was discharged so that I could go be with her. The magnitude of what had happened had not really dawned on me and when I walked into the NICU room where she was and saw her connected to so many tubes, I could not help but break down. I cried for her, for myself, and for the uncertainty ahead. The neonatologist then told us that their primary aim was survival and we would have to wait and see how things would go if she survived. We then spent the next seven days waiting and praying for her to open her eyes. I vividly recall the joy I had when she opened her eyes and the next target was now to get her off the NG tube. The nurses started with spoon feeding and on the third day, one of the nurses asked me to try a bottle. To everybody’s surprise, she latched on the bottle and finished her feed. The neonatologist told us we could go home after monitoring her feeding for two days. We were then discharged and told we had dodged a bullet. But we had not!
It didn’t take long for us to realize something was off. She hardly slept, she was spastic, and would let out screams that did not sound normal. We brought this up severally with her primary pediatrician and friends, but we were told babies don’t sleep and she might have colic. I know they meant well, but I felt unheard. Looking back, I realize I should have pressed more. Yes, newborns do not sleep for extended hours, but they do sleep. Eliana hardly slept and I am yet to meet a neurotypical baby who screams like she used to. After her ten weeks jab, I told the pediatrician I was concerned about her sight; she didn’t even seem to see light. We were sent for an eye examination where the specialist—in not very kind words—told us she would never see and had paled optical nerves. Things went downhill from here as three days later, she started making jerky movements. I took a video and sent it to her pediatrician who said he suspected she had seizures and booked an appointment with a neurologist. She was put on anti-seizure medication, but seemed to get worse. She would get approximately five clusters of seizures and she ended up being on a cocktail of drugs that didn’t seem to work. If anything, they seemed to drain the life out of her.
In April 2019, when we had been admitted in hospital for two weeks due to seizures, a friend introduced us to a mum whose daughter had a rare genetic disorder. She asked if we could visit her in her home and I am glad we did. All this time, we had not heard of the term HIE. It also felt like this was happening only to us. We had a myriad of questions and we felt hopeless and tired. After listening to our birth story, she asked me if I had heard of “Hope for HIE.” I said “no.” She gave me a brief and asked me to join the Facebook group. We had hardly left her home when I sent my request to be added to the group. Once my request was approved, I started reading, searching, and could not believe it. Our experience was not an isolated one, we were not alone! Just by joining the group, we got much needed resources and information that we had not been privy to before. We finally understood our daughter’s condition and could actually do something about it. We made a trip outside Kenya to explore treatment and therapy options for Eliana informed by the information we had collected from the experiences of other families in the group. We got a diagnosis on her vision and learned about CVI and the proper interventions to aid her vision. Her vision could get better and oh, it did get better! We got the right diagnosis on her seizures and were told she had infantile spasms that could only respond to certain types of meds. We met other HIE families who encouraged us, responded to our questions, and pointed us in the right direction. One family even gave us Eliana’s Leggero Reach stroller for free that we couldn’t source locally, we only had to pay for shipping!
Fast forward to now. Our daughter is still 100% dependent, G-tube fed, and on anti-seizure medication, but she is loved and accepted. We know how to champion for her, how to navigate the difficulties we encounter, and that we are not alone. That families thousands of miles away from us could offer their time and experiences with us to help us in our journey is something we are eternally grateful for. I pray that I can be helpful to families in Kenya and beyond who find themselves in this journey, that I can be able to extend the support that has been so graciously extended to me by others who have gone before me.
As our community grows, so does our need for mentors. We are always looking for parents and caregivers who have walked the HIE journey and are looking for meaningful ways to give back. If you’ve been there and feel inspired to support other HIE families as a Peer Support Mentor, we would love to hear from you. Together, we can ensure no HIE family feels alone.
Apply to be a Peer Support Mentor.
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