The heart of our story lies in Eliana. In November 2018, her birth which was expected to be seamless, turned into a fight for life. After seventeen minutes of resuscitation, Eliana opened her eyes but began seizing. She had suffered from severe birth asphyxia, and her chances of survival seemed minimal.
Her NICU journey was marked by uncertainty and anxiety, yet she miraculously survived. Though she was discharged appearing well, the days ahead revealed deeper challenges such as irritability, sleeplessness, seizures, and vision loss caused by oxygen deprivation at birth. Her parents’ attempt to raise concerns at her regular vaccination appointments seemed to bear no fruit and were left with more questions than answers.
Together For HIE
Together For HIE
At five months, during a two-week hospital admission due to continuous seizures, her parents first encountered the term Hypoxic Ischaemic Encephalopathy (HIE). The months preceding this had been extremely difficult and they felt unheard, isolated and helpless. However, after hearing about HIE and establishing just one connecting with another family going through a similar journey, things changed. They finally understood Eliana’s condition including the visual challenges and the seizures and how to manage them. Most importantly, they realized that they were not alone. There was hope.
Sadly, many families still face HIE in isolation. Standard treatments like therapeutic hypothermia are not fully adopted, and individualized follow-up care after NICU stays is lacking.
This is why Julie Karigu, who is Eliana’s mother, founded Together for HIE to ensure that life outcomes for children that suffer HIE are enhanced, systems are strengthened, families supported and HIE awareness promoted.