When we got discharged from the NICU just about seven years ago, I had a million questions. The most burning desire for me was to connect to other families who had gone through what we had just been through... a traumatic birth, hypothermic cooling, scary MRIs and EEGs, tubes and wires, and infinite unknowns ahead of us. I had to go to google to understand what Hypoxic Ischemic Encephalopathy meant, despite being warned not to.
By Nick Burton
In 2015, when our son, Grey, was born, there were not many interventions available to neonatologists to help lessen the brunt of an HIE injury.
In fact, we had to make a decision within our son’s first two hours of life to be transferred from what we thought was a high-level NICU to a nearby university hospital so that our son could receive brain cooling—the only option available to help protect his brain from further injury.
A week or so later, while our newborn son’s condition remained critical, an attending physician had a difficult conversation with me and my wife. She said, “we’ve gotten good at saving lives like Grey’s, but we haven’t caught up with what comes next.”Read more
My Life as a Fraud
(Posted on behalf of the original author anonymously)
Most of my life I wore my heart on my sleeve. I was an open book and comfortable being authentic. I had two degrees and a successful marketing career. I made friends easily and was blissfully confident in myself and my abilities. I had always worked hard, tried to “do the right thing” and treat others well. Until I became a special needs parent with my second child.
We knew about the severe hydrocephalus before she was born. At six months I worked from home on bed rest after convincing my OBGYN that I was much better off doing my job from bed than consulting with Dr. Google for the final three months of my pregnancy.
We had to deliver her at 37 weeks due to the severity of the hydrocephalus and spent 6 weeks in the NICU. Her hydrocephalus caused some of the bones in her skull to fuse prematurely (craniosynostosis). She endured 4 brain surgeries by the time she was 6 months old. She wore a helmet to help reshape her skull after cranial remodeling surgery.