When Nykole Nichols has a question about her son, she can’t always turn to the friends and family she always thought she would.
With Jude, who was injured at birth and is severely affected, it’s often more complicated. Their questions are about equipment, specialists and therapies.
“We can't just call our family or friends and ask for advice like typical first time parents. Our questions are usually questions that they couldn't answer. All they can do is just be there and be supportive. Be our shoulder to cry on,” Nykole said.
A mom’s search to find someone to take her family’s photos ended up with a new connection between two families impacted by HIE.
Jamie Burt wasn’t happy with her 4-year-old daughter Remilyn’s school photos since she had her eyes closed and wasn’t looking at the camera, but also wasn’t sure who should take family photos for them.
For HIE families like theirs, family photos can be a challenge, especially when their child, like Remi, is unable to sit or stand.
When she had to go through the toughest decisions and emotions in her life, Lauren Macke found support from a group of parents who had been there.
Lauren’s son Jonah was born early and went without oxygen for 14 minutes. He was diagnosed with HIE and went through cooling therapy.
Testing showed his brain damage was extensive, and Lauren was left to decide what to do next.
In the days after their son was born, the news kept getting worse.
Baby Cole suffered HIE at birth after getting stuck in the birth canal and aspirating meconium. He was having seizures, he needed emergency cooling treatment hours away from home and tests of his brain activity weren’t looking good.
Sara Ames Saltzman felt alone and terrified. She didn’t know how to tell her friends and family the devastating news she was receiving in the hospital from her baby’s many doctors.