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November is Prematurity Awareness Month - a month dedicated to the more than 500,000 babies born too early each year in the US, about one-fifth of them due to preeclampsia. For many of us, this month is a reminder of the hours spent at the side of an infant born too soon. For Jennifer Carney, it's also the anniversary of her son's homecoming from the neonatal intensive care unit (NICU).
After a sudden case of eclampsia forced an emergency cesarean delivery at 32 weeks, Carney found herself in ICU, on a ventilator, separated from her 3 lb 2 oz newborn son. "The hospital where he was born - the closest one to our house - did not have a NICU," she explains. "He was transferred to a larger hospital about 15 miles down the highway, making a brief stop by my ICU room before being taken in an incubator to the waiting ambulance. This was the first - and last - time I saw him during my eight day hospital stay." Read Jenn's story here.
When a mother develops preeclampsia before her baby is mature, doctors must weigh the relative risks of continuing the pregnancy against the risks of a preterm birth. Some measures, such as steroid shots to promote fetal lung development, are used to achieve better outcomes for premature infants, but there are no guarantees. When preeclampsia hits early, the result can be a very sick mother and an extremely premature baby.
HELLP syndrome survivor Julie Lesh's daughter was born at 25 weeks, weighing 1 lb 10 oz. The early birth left Lesh in recovery mode while her tiny daughter's life hung in the balance. Lesh's husband had "to handle pretty much everything" until his wife was released 9 days later.
Treatments required for both the mother and the baby can keep them apart. The need for oxygen, magnesium sulfate, blood transfusions, and other treatments can make it impossible for the mother to be with her baby in the NICU and family members often have to split their time between mother and infant. For Todd Bemis, this meant that he "handled a lot of the day to day" while his wife recouped her health and energy following the early HELLP-related birth of their first daughter.
Of her own experience, Carney recounts, "The hospital staff did everything they could to help facilitate communication with the NICU, but talking to the nurses on the phone was a poor substitute for actually being there. The separation was jarring and made the recovery process much harder than it probably would have been."
The transition from ICU patient to NICU parent is a difficult one. After recovering from the trauma of a rough birth, parents are thrown directly onto the NICU roller coaster. Parents must learn a whole new vocabulary. The moments that aren't spent in suspended animation, sitting and waiting, are largely filled with incomprehensible terror.
Babies born extremely premature often experience prolonged stays in the NICU and need multiple interventions to survive. Lesh's daughter stayed in the NICU for 90 days. Lesh notes that after her own release "it became a case of ignoring my own health issues to concentrate on [her daughter] and her struggles. Her team would remind me to take my medication and check my blood pressure."
Many preemies in the NICU require oxygen. Complications are common. Diseases such as necrotizing enterocolitis (NEC), retinopathy of prematurity (ROP), brain bleeds, and acute respiratory distress syndrome (ARDS) can develop and threaten the life and health of the infant. Much of what happens to the infant is out of the parents' control. It is hardly surprising that studies have shown that PTSD is fairly common among parents with children in the NICU.
Any new mother is susceptible to developing postpartum depression regardless of the circumstances of the birth. The additional trauma of a birth complication, a premature infant, and the atmosphere of a NICU produces heightened emotions and intensity, contributing to feelings of depression. Parents deal with the immediate problems surrounding their own children - and often are close witnesses to the trauma of other parents and families. When the otherwise constant beeping of machines is pierced by an alarm indicating that an infant has stopped breathing, the whole team of specialists in the NICU jumps into action. These moments happen without warning. Sometimes it is your own child. Sometimes it's the child of a parent you have gotten to know during your stay. It's never easy to witness and it happens often.
The needs of premature infants following their release from the NICU can also have a negative impact on the mental health of the mothers. Eclampsia survivor Becky Sloan, recalls her experience with her first son. After a 30-day stay in the NICU, "The threat of RSV [respiratory syncytial virus] kept me secluded from friends, family, or even a walk around the neighborhood." RSV is a virus that normally causes mild colds in most people, but can develop into pneumonia in preemies. The enforced three-month isolation and her son's "stomach pain, sleeping issues, and other premature side effects" contributed to Sloan's postpartum depression. Her experience with eclampsia also played a part, "I tried [unsuccessfully] to psych myself into believing that because I survived and our son survived, I should be happy."
"There is nothing I can do to change the circumstances of his birth, our eight days of separation, or my postpartum depression," says Carney. "This is why I share my story and why I sought out the Preeclampsia Foundation. For me awareness is as much about not feeling alone in my experience as it is about informing those who have not yet joined our ranks. My son was born two months too soon. He is now six years old and in kindergarten. I am aware of prematurity and preeclampsia because of him."
Florida Perinatal Quality Collaborative
Hypertension In Pregnancy Initiative Kick-Off, Winter Park FL
November 6, 2015
March of Dimes Prematurity Prevention Conference
Crystal City, VA
November 17, 2015
2016 World Patient Safety, Science & Technology Summit
Dana Point, CA
January 22-23, 2016
11th Annual Texas Conference on Health Disparities
Ft. Worth, TX
June 9-10, 2016