Australian mom Claire Greer is one of the co-founders of Hope for HIE, which grew out of the vision of a few moms who wanted to help parents of children with HIE, or Hypoxic Ischemic Encephalopathy, connect.
She shares her HIE story and how she has found hope in her journey.
Tell us about your little one with HIE, from diagnosis until now.
Sophie was born at 40+4 weeks after I noticed that she'd stopped moving in utero. A quick trip to the hospital showed that she was in distress, and a crash c-section followed. She was born with her umbilical cord wrapped six times around her legs, cutting off her oxygen. She had no heartbeat and was resuscitated for 17 minutes. She was flown to the nearest NICU for 72 hours of full body cooling treatment, and developed seizures and several other complications. She was diagnosed with Grade II-III HIE.
Despite some early delays in communication and gross motor development requiring two years of physiotherapy, occupational therapy and speech therapy, Sophie has no long-term effects. Now 7 years old, she loves school, is especially fond of reading and writing, is a hugely caring big sister and friend, and aspires to be a nurse when she grows up.
How did you get involved with Hope for HIE?
I co-founded Hope for HIE with other families in 2010. Our HIE diagnosis left us feeling confused and lonely, and we only truly felt the first sparks of connection when we “met” others in the same situation through online groups, such as the Newborn Brain Cooling Facebook page. We felt there was a space out there for a formal organisation dedicated to HIE awareness, education and support, and put together Hope for HIE with the great community of parents we already knew. It has grown exponentially since, and is in great hands with the present U.S. Board of Directors.
How has Hope for HIE helped you?
Developing Hope for HIE gave me a real sense of purpose in the early years, which made me feel a little less helpless about everything. As a parent, having a community of others who can help around the clock, who truly understand what you're going through, is just so vital for your sanity. A diagnosis of HIE always comes with a measure of “wait and see,” and you can find yourself second-guessing every little thing your child does or doesn't do. Being able to gain perspective through others provides a sense of calm and acceptance.
What does hope mean to you?
In the early days of our diagnosis, all my ideas of “hope” centred on a complete recovery for my child. Ironically, now that we have actually had a complete recovery, I see that this was not the hope I needed at all. For me, hope is simply knowing that no matter what happens, you will find moments of celebration, happiness and joy along the journey. No matter how dark things are, there is always light, and you have the strength to find it. And no matter their outcome, your child will show you love so immense that you could not possibly have imagined it before. That kind of hope, that kind of strength, that kind of love, is a true gift.
How do you find hope in your journey with HIE?
For us, celebrating each step forward, no matter how small, was the key to finding hope. Worrying about each step back didn't do anything for us, so we chose not to (even if it took a little time to get to that stage). This is easy for me to say when our outcome has been relatively uncomplicated, but I think it's relevant in general. Focus on now, focus on what's going right, and make a plan to tackle anything else as best you can.
What is your advice to a new family to HIE, who is still finding that hope. How can they get there?
The most important thing I've come to understand in recent years is that you need to see the full diversity of outcomes, and the enormous range of ways other people find hope, in order to know that there is no single end point for your journey. Your path is unique, but you are not alone, and you will find hope where you never expected it. Look for the good, learn to celebrate anything that's going well, and find relief in the knowledge that there are hundreds of families out there who know what you're going through, and have got your back through Hope for HIE.