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Janet Blanchard, Published April 03 2014

Letter: Survey can help meet needs of fragile infants

Premature birth continues to be a major health challenge in the United States. Each year in Minnesota, approximately 10 percent of all births are considered premature (prior to 37 weeks), 1.6 percent of which are considered extremely premature (22-25 weeks) – Minnesota Department of Health, 2013. Having a premature delivery often catches parents off guard.

When prematurity is extreme, at 22-25 weeks of gestation, we must consider the challenges that come at the limits of viability, or ability to survive outside of the womb. Research has demonstrated that infants born during this time (who survive) will face severe biological brain disorder or “developmental disability” e.g., mental retardation, cerebral palsy, epilepsy, or autism, as well as behavioral challenges that create immediate and prolonged stress on infants, families, and hospital staff.

In addition to the stress early delivery can cause, the use of health care resources, community resources and organizations involved in the follow-up of these infants over a lifetime can be extensive.

Providers talk to parents in terms of survival and morbidities (long-term health challenges), often at the time of imminent delivery. Many have wondered if the care of these infants is justifiable, humane or appropriate. Questions remain about when prospective parents should be informed of the risks of extremely preterm delivery, how the information should be delivered, and what the public expects from health care systems.

For adults, advance care directives have been an option for creating a plan of care in the event of a health care disaster. The use of advance care directives has been demonstrated to decrease end-of-life care costs significantly. These advance care directives guide family members to make decisions about their loved one’s care based on the patient’s own decisions. However, the same benefit does not exist for the unborn. Parents are considered the decision-makers for those too young to make such decisions.

At times, parents may be faced with these decisions sooner than they expect in the event of preterm labor and delivery. Parents make these decisions based on the wishes they have for their child, and based on their own culture, morals and values. Some parents feel that life should be maintained at all costs, while others consider care of neonates born at 22-25 weeks of gestation more distressing than allowing a natural demise.

If you are a parent of an extremely preterm infant, are pregnant or considering pregnancy, or are someone who cares for infants born at 22-25 weeks throughout the life span, you are eligible to participate in a short survey to better understand how to best meet the needs of the families and caregivers of these fragile infants. This survey is open to people older than 18.

To participate, please contact jbnnpee@gmail.com and a survey will be shared with you electronically. Your participation will help future families and give a voice to extremely premature infants.

Blanchard, MS, is a neonatal nurse practitioner and a doctoral nursing student at St. Catherine’s University in Minnesota.