Meet Irene Adjetey, one of our HIE Awareness Ambassadors from Accra, Ghana.
What is your story and connection with HIE?
Evangel is my second child born on December 3, 2019. It was on that faithful day my life, and that of my son, changed completely. My labour lasted for about six hours and it was a very painful one. Finally, at about 11:00 pm, the baby’s head appeared after pushing for about 20 minutes but his shoulders got stuck in my pubic bone, a situation called shoulder dystocia which lasted for about five minutes. Finally, the baby was fully delivered but wouldn’t cry.
The midwife and Doctor did everything they could to resuscitate him but he didn’t respond. Eventually, my baby was rushed to the nearest NICU and was turning blue and presented with seizures on arrival at about 12 am. At this time, I was hopeless and confused and wondering what just happened. The painful part is when I was in a different hospital, not knowing what that poor baby was going through. I couldn’t be with my baby at that point. The next day I insisted I wanted to see my baby so I was discharged. I went to see my baby at the NICU and that was when I was hit with the bad news. My baby was brain-injured due to a lack of oxygen to the brain but they couldn’t tell me to what extent. I had never heard of a baby’s brain being injured at birth, that was my first time. It was a bitter pill to swallow.
In my brokenness and confusion, I started researching what it meant for a baby to be brain-injured and the prognosis. In my research, I came across Hypoxic-ischaemic Encephalopathy, HIE, exactly what happened to my beautiful baby. My finding shook me off my feet, I became so terrified and anxious. I then researched what could be done for a brain-injured baby to undo the injury. I found after about 72 hours that the best the NICU could have done for my baby was to have cooled him but nothing of that nature was done for him. At six months old my son was diagnosed with severe Cerebral Palsy, Dystonia, GI Problems, and was recently diagnosed with a genetic condition called Creatine Transporter Deficiency.
Despite his many challenges, Evangel has a charming smile and loves to be around his family. I have learned so many valuable lessons in my journey with my son, most especially, remaining resilient and holding on to hope. I have learnt to appreciate little things in life and have learned to be an assertive advocate for my son and others like him.
How did you first hear about the diagnosis of HIE?
Through my research.
How did you first hear about Hope for HIE?
I searched the internet to find a support group or anyone who had such a situation so I could learn or connect and I came across Hope for HIE.
What do you want the world to know most about your story and HIE?
I never imagined what happened to my son could ever happen considering the diligent prenatal appointments and good self-care. It can happen to anyone and I think people should be aware of HIE, its causes and prognosis, and some way to avoid it if possible.
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