A NICU Family and the Vermont Oxford Network (VON): Working Together to Improve the NICU Experience for Micropreemies and Families

I had no idea what VON was or why it was important…until last week.

The Vermont Oxford Network (VON) is a group of over 950 hospitals from around the world that voluntarily work together to share data, ideas, and potentially better practices with each other. The work that is done within the collaborative influences hospital policy, standards of practice, and affects day-to-day life for families in the NICU.

I spent 3 days surrounded by doctors, nurses, respiratory therapists, and other parent representatives who want to make things better for NICU babies and their families. Wow.

This meeting focused specifically on improving the care for the “small baby,” or in this case, babies born before 26 weeks gestation. It was very eye-opening and humbling to hear these professionals speak frankly about the survival rates and challenges that Extremely Low Birth Weight (<1000 grams), or micropreemie, babies face.

More than once the data proved just how incredibly lucky we are to have Jax. As a micropreemie born at 23 weeks, 3 days gestation weighing 640 grams, Jax had a very low chance of healthy survival. 96% of babies born at 23 weeks have some sort of disability or delay and the discussion often made its way back to the idea of “quality of life.”

The professionals in the room thought it was important to do  everything in their power to reduce the occurrence of certain “morbidities” (such as Chronic Lung Disease, brain bleeds, late infections, necrotizing enterocolitis (NEC), ROP, etc.) that these babies often face to give them the best chance at a healthy and typical life.

I learned that the majority of hospitals with high-level NICUs regularly save 23 weekers (this was not the case when Jax was born almost 2 years ago). But hardly any will save a baby born at 22 weeks. If hospitals tried to save more 22 weekers, could that improve the care of 23, 24, 25, and 26 weekers?

Some of the people at the meeting started their careers at a time when a baby born at 28 weeks gestation was “on the fence.” As technology improves and breakthroughs occur, littler and younger babies are surviving more and more.

When micropreemies were first given a fighting chance (because of the invention of surfactant therapy), it was generally thought that the younger the baby, the more intervention it needed.

As more and more tiny babies are being treated and surviving, professionals are recognizing that less intervention may improve developmental outcomes.

Hospitals in our VON collaborative are considering the concept of a “Small Baby Unit” within their NICUs. The Small Baby Unit may look different from hospital to hospital, but the main idea is to create a less harsh environment for these tiny people. Some examples of how to do this include:

• Dimming the lights in the rooms and in the hallways.
• Silencing the monitors (nurses wear vibrating monitors that notify them of an alarm).
• Performing bedside cares on a flexible 6-hour schedule – if the baby is awake, cares are done at that time, rather than waiting for the assigned care time. (This is a far cry from cares being done on the typical, strict every-4-hour time schedule.)
• Coordinating the schedules of doctors, nurses, and respiratory therapists so they do their exams at the same time to reduce the amount of stimulation and stress for the baby.
• Enforcing a quiet atmosphere.

In general, the baby would be left alone as much as possible!

It seems like common sense to me, but it’s a pretty drastic paradigm shift for those working in the NICU.

I was there to help give a voice for the family – sometimes ideas look good on paper, but when they trickle down to a family living in the NICU, there are aspects that could be improved.

It was my job to learn how other hospitals are supporting family-centered care and to bring those ideas back to our hospital for possible implementation.

Many of the projects I work on as a volunteer for the NICU parent advisory committee stem directly from the hospital’s participation in the VON collaborative. Some examples include a Kangaroo-a-thon that celebrates the importance of Kangaroo Care in the NICU, family-to-family newsletters, family dinners, bulletin boards, admission binders, and discharge checklists.

Now it’s my turn to bring back my ideas and hopefully help make things even better for patients and families in the NICU! I had an idea of creating a worksheet to help families participate more in rounds and the change-of-shift nursing report. I also thought it would be interesting to create video “snip-its” from the parent’s perspective to use for nurse training. (I.e. This is what it feels like when…; This is how I interpret XX…)

I can’t wait to get started!

Do you serve on your hospital family advisory committee? What types of projects are you working on?

*All opinions and ideas are my own and are not endorsed by Children’s Hospitals and Clinics of Minnesota or the Vermont Oxford Network.