Deb Discenza is co-author of the Preemie Parent’s Survival Guide to the NICU and founder, PreemieWorld.

Premature babies grow up. It’s time to pay attention.

Conditions
May 24, 2022

Premature babies (a.k.a. preemies) and their families are increasingly becoming a powerful voice in society. Life in and after the neonatal intensive care unit (NICU) is like being dropped off a cliff. I support the preemie community from pregnancy to NICU to home and into the adult years because I had a preemie. My daughter’s story is a stunning example of a system gone wrong and why better outcomes research …

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Premature babies grow up. It’s time to pay attention.

COVID-19 is rattling the nerves of preemie parents everywhere

Conditions
March 27, 2020

As I write this, hand sanitizers, disinfecting wipes, gloves, and masks are sold out everywhere in the panic over COVID-19. People are writing about increased anxiety, and mental health professionals cite a massive surge in requests for help.  Go anywhere, and it is not unusual to see people wearing personal protective equipment. Welcome to my world 16 years ago when my daughter was born prematurely at 30 weeks’ gestation …

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COVID-19 is rattling the nerves of preemie parents everywhere

Don’t land in the teaching hospital on a holiday weekend

Patient
September 30, 2015

“Don’t ever land in a teaching hospital on a holiday weekend, they always staff up with residents,” noted a close friend who was all too familiar with the inner workings of hospitals.

That statement sticks in my head heavily today as I prepare to visit my father’s year-old grave.  My father, a man that was involved in the Department of Health & Human Services (HHS) and private sector research societies for decades, …

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Don’t land in the teaching hospital on a holiday weekend

Why palliative care and hospice is the ultimate gift

Conditions
January 19, 2012

Dear Doctors:

I am writing no less than 45 days after my mother died from a GI bleed from ovarian cancer.  Not once did my mother’s team of doctors mention palliative care.  It was not until days and even hours before her death that hospice was discussed and implemented. Our family was blindsided by this.

While no one likes to talk about the topic of death, it is important to remember that …

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Why palliative care and hospice is the ultimate gift

Top 5 NICU tips from a preemie parent

Patient
February 15, 2011

Heads up folks in the Neonatal Intensive Care Unit (NICU), parents of premature babies want you to succeed more than you may realize.  It is just hard for them to communicate this through the fog of stress and exhaustion that has consumed them for countless hours, days and even months.

So here is a little insight into the parent mind and what they want you to know about what it is …

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Top 5 NICU tips from a preemie parent