Those Who Weather the NICU Can Weather Anything

October 26, 2018

by Beth Cohen

It is an honor to co-chair the 2018 Hand to Hold Baby Shower Luncheon. The theme chosen for this year’s luncheon—”Seasons of Life: Strength from the Storm”—is one that resonates with my family’s experience in the NICU.

NICU baby, Hand to Hold, NICU support

Photo courtesy Beth Cohen

Our journey began over eight years ago in New York City when I was pregnant with our son. My pregnancy had not been easy as I was hospitalized with false labor four different times starting at 30 weeks. As we headed into the July 4th holiday weekend, my doctor was concerned as my red blood cell and platelet counts, which control one’s clotting factors, had been steadily falling throughout the week. On Sunday morning, July 4, 2010, my doctor urged me to go to the hospital to be monitored. My blood pressure had spiked to an unsafe level and my platelets had dropped well below normal healthy levels.

The ER doctors diagnosed me with HELLP syndrome (Hemolysis, Elevated Liver enzymes, Low Platelet count), a rare and life-threatening form of preeclampsia. In most cases, women get better following delivery, in my case, the rarest of the rare, the opposite occurred. Following my diagnosis, I was whisked away to an operating room, where our son was immediately delivered via emergency c-section under the light of fireworks bursting across the East River.

While I was holding on for dear life, our son was rushed away to the NICU. Over the next 48 hours, my organs began to shut down one by one. My platelets dropped to 24,000, well below the normal range of 400,000. My kidneys and liver stopped working, and my body began to hemorrhage from the inside out. Although there is no cure for HELLP, after multiple rounds of platelet and blood transfusions, IVs, antibiotics, and a lot of prayers, my body began to stabilize.

Thirty hours after our son was born, I was able to see him for the first time. To say I felt immense guilt and failure is an understatement. I believed that I had failed my first duty as a mother: to protect my child. His first moments were not those of being held and loved; they were alone, hooked up to tubes and fighting. Although the nurses at NYU were incredible, our stay in the NICU did not include social workers or peer mentors. We felt isolated, unsure of the future and scared.

Beth Cohen, NICU baby, Hand to Hold

Photo courtesy Beth Cohen

In the fairytale birth story, the moment you leave the hospital with your new baby is one of the best moments of your life. For me, it was one of the most terrifying. It took almost two years for that fear, guilt and anxiety to subside.

I truly believe that any parent who has weathered the NICU can weather anything. I could have only dreamed of the support of Hand to Hold during this incredibly vulnerable time.

The NICU doctors and nurses are undoubtedly some of the best; yet families endure immense emotional trauma that goes well beyond where traditional medical care ends. Hand to Hold is changing the landscape of the NICU. Through their plethora of resources, podcasts and peer mentors, Hand to Hold is helping families weather the storm days, weeks, and months following their child’s birth and allowing families to see the clearing ahead.

About Beth Cohen, Assoc. AIA, LEED AP:

Beth holds a BA in Design with a concentration in Interiors from The George Washington University in Washington, D.C. and a Masters in Architecture from Parsons School of Design. She worked for 10 years in New York for Costas Kondylis and KBA before moving back to Austin in 2012 to open her own office, Beth Cohen Design Office, which specializes in private residences.