Wednesday, August 26, 2009

New York Times: For Parents on NICU, Trauma May Last

The New York Times had an article yesterday about new research, which indicates that some parents exhibit symptoms of post-tramatic stress disorder (PTSD) after their time in the NICU. Mom had commented on the similarity months ago. I copied the article below, because the NYT site requires registration.

For Parents on NICU, Trauma May Last
By Laurie Tarkan
New York Times
August 25, 2009

Kim Roscoe’s son, Jaxon, was born three months early, weighing two and a half pounds. But for nine days he did exceedingly well in the neonatal intensive care unit, and Ms. Roscoe felt little different from the other new mothers.

Her nightmare started on Day 10.

“I had left him late the night before, in my arms, tiny but perfect,” said Ms. Roscoe, now 30, of Monterey, Calif. But when she returned to the NICU the next day, Jaxon was in respiratory and kidney failure, and his body had swollen beyond recognition.

“He was hooked up to ventilators, his skin was turning black, the alarms kept dinging over and over,” Ms. Roscoe recalled.

Jaxon is 16 months old now, and home with his family. But he was in the NICU for 186 days, and his days and weeks were punctuated by near-death episodes.

During the six-month ordeal, Ms. Roscoe had constant nightmares. She slept with her shoes on, expecting a call from the hospital at any moment. She became angry at the world, and so jumpy she thought a supermarket scanner was one of Jaxon’s monitors going off. Her husband, Scott, immersed himself in projects, took care of their daughter, Logan, now 6, and held things together emotionally.

About three months after her son’s birth, Ms. Roscoe asked to see a psychiatrist. She was given a diagnosis of post-traumatic stress disorder, or P.T.S.D. — a mental illness more often associated with surviving war, car accidents and assaults, but now being recognized in parents of premature infants in prolonged intensive care.

A new study from Stanford University School of Medicine, published in the journal Psychosomatics, followed 18 such parents, both men and women. After four months, three had diagnoses of P.T.S.D. and seven were considered at high risk for the disorder.

In another study, researchers from Duke University interviewed parents six months after their baby’s due date and scored them on three post-traumatic stress symptoms: avoidance, hyperarousal, and flashbacks or nightmares. Of the 30 parents, 29 had two or three of the symptoms, and 16 had all three.

“The NICU was very much like a war zone, with the alarms, the noises, and death and sickness,” Ms. Roscoe said. “You don’t know who’s going to die and who will go home healthy.”

Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected.

“The second trauma is seeing their own infant having traumatic medical procedures and life-threatening events, and also witnessing other infants going through similar experiences,” said the author of the Stanford study, Dr. Richard J. Shaw, an associate professor of child psychiatry at Stanford and the Lucile Packard Children’s Hospital.

“And third, they often are given serial bad news,” he continued. “The bad news keeps coming. It’s different from a car accident or an assault or rape, where you get a single trauma and it’s over and you have to deal with it. With a preemie, every time you see your baby the experience comes up again.”

Abby Schrader and her partner, Sharon Eble, delivered twins at 23 weeks. Both girls, born at 1 pound 5 ounces each, were having continuous near-death events. “We were constantly being asked whether we wanted to remove support,” said Ms. Schrader, of Philadelphia.

Eighteen days after the girls’ birth, the couple did withdraw support from one baby, whose health had badly deteriorated. The surviving twin, Hallie, now 3, was in the NICU for 121 days and continued to have medical problems once home. “From the moment of their birth, and still to this day, we feel like we’re triaging everything and just hanging on,” Ms. Schrader said.

The Stanford study found that although none of the fathers experienced acute stress symptoms while their child was in the NICU, they actually had higher rates of post-traumatic stress than the mothers when they were followed up later. “At four months, 33 percent of fathers and 9 percent of mothers had P.T.S.D.,” Dr. Shaw said.

It may be that cultural roles compel the men to keep a brave front during the trauma to support their partners, Dr. Shaw said, adding, “But three months later, when the mothers have recovered, that’s when the fathers are allowed to fall apart.”

The post-traumatic stress may take the form of nightmares or flashbacks. Sufferers may feel panic every time a beeper goes off in the intensive care unit, or they may avoid the trauma by not visiting the unit or by emotionally distancing themselves from their child. Over time, they may develop depression, anxiety, insomnia, numbness, anger and aggression. These symptoms, of course, can impair their abilities as parents.

Several studies have shown that the risk of P.T.S.D. was not related to how tiny or sick the child was or how long the stay in the NICU. “It had to do with the parents’ coping style,” Dr. Shaw said. “There were some who were more resilient and others more vulnerable.”

In one study of rural African-Americans, those who were at greater risk of post-traumatic stress reported more problems in their daily lives, like financial trouble or lack of a partner, said the study’s author, Diane Holditch-Davis, a professor at Duke University School of Nursing. One of the biggest problems for these parents is coping after they finally leave the NICU.

“It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore,” Dr. Holditch-Davis said.

Ms. Schrader, in Philadelphia, felt a similar isolation in dealing with her surviving daughter’s health problems. “We got the sense that people just didn’t want to hear about it anymore,” she said.

Experts say parents who are at risk for post-traumatic stress should be identified ahead of time and given help to prepare them for dealing with the initial trauma. But many hospitals are focused on saving the infants, not the emotional crises of the parents.

“Some hospitals have really great programs, and in some, it’s really very sad,” said Liza Cooper, director of the March of Dimes NICU Family Support program, which offers psychological support to parents in 74 hospitals nationwide. Even though most units have social workers, she went on, “there’s really no one there to support the parents, provide group activities or education.”

Vicki Forman did not realize that she was suffering from post-traumatic stress until about four years after the premature birth of her twins, when she began researching her book “This Lovely Life” (Mariner Books, 2009), about her experience in the NICU and raising her surviving son with multiple disabilities.

“What the parent is going through is more or less dismissed because what you’re contending with are the health issues of your child,” she said. “Occasionally a social worker will say, ‘Are you taking care of yourself?’ but never, ‘This is a traumatic experience you endured and you need to pay attention to these symptoms.’ ”

Some hospitals pair parents of premature babies in intensive care with those who have been through the experience. One study found that 16 weeks after childbirth, mothers who were matched with NICU veterans had less anxiety and depression, and felt they had more social support, than mothers in a control group.

In addition to the family support program, the March of Dimes runs an online support community called shareyourstory.org. “The most critical piece is to help prepare someone so they know what to expect and don’t fall into a world of frightening unknowns,” said Ms. Cooper, from the March of Dimes.

Untreated P.T.S.D. can have lingering effects on the child. During the NICU stay, for instance, traumatized parents may find it hard to hold or even look at their child, and that can profoundly affect the baby’s attachment to the mother. Later, mothers might experience “vulnerable child syndrome,” in which they become so anxious that a minor medical event sends them into a panic. Normal, everyday risks can seem life-threatening; children can learn to gain unhealthy attention from physical complaints.

In her book, Ms. Forman wrote: “From the moment my twins were born, I saw potential for tragedy wherever I turned. It would be years before I stopped thinking that way.”

In Monterey, Kim Roscoe is coping with a similar anxiety now, 16 months after Jaxon’s birth. “I still freak out if he has a runny nose,” she said. “And when he gets a fever, I’m back in the NICU.”

5 comments:

Richard en Maaike said...

In hoeverre herkennen jullie je in dit verhaal? Ik hoop toch dat er in jullie directe omgeving ook mensen zijn bij wie je je verhaal kwijt kan.
X Maaike

Mascha Rodeck said...

Wow. That does sound familiar.

Now I am wondering where are you guys in the process. I sincerely hope that all that you receive from your community is indeed helping you with overcoming your traumatic experience. I still feel that no matter how much I may have experienced similar stuff, I am still not in your shoes.

I can only continue offering my ears listening to you, my compassion, and help where I can be of help - and Anna's giggles for Loki's amusement.

Much love,
Mascha

Cheryl said...

Thanks for sharing this. I personally found all of my time with Bri in the hospital, and especially after neurosurgery when we couldn't get the pain under control and I had to raise hell to get a pain specialist in to help, exhausting, and traumatic. Moreoever, the nurses in the PICU told me repeatedly that children in intensive care often get ICU psychosis, from the stress of what they feel, see, experience, their rhythms being thrown off, the constant alarms, etc. then you have the stress of all of you home together trying to recover. The challenges of the NICU for preemies are even greater, and I always wonder whether knowing that what you are feeling is "normal" for abnormal situtations is any help. But I agree with Mascha in hoping that the little all of us who know you can offer in the way of support, jokes, and even a reprieve here and there can help. ONe of mom's last posts before the ng tube placement where she is walking all night trying to get Loki to eat made me wonder how in the world you were coping after months of worry, and stress, and sleep deprivation. You both are doing an awesome job, but I hope sometimes you can just hold each other and your baby, and let some of the feelings wash over and through you.
Love,
Cheryl

Suzan said...

Ha lieve L en J,

Tot nu toe niet helemaal herkenbaar uit jullie verhalen. Of wel? Maar het geeft wel aan wat een heftige ervaring zoiets is. Hopelijk krijgen/hebben jullie deze symptomen niet!

Heel veel goeds toegewenst,
Suzan

Kyra said...

Hi Jess and Lijn,

I am sure that you recognize parts of this, and that you may not know of the effects yet while still in the survival mode. It is good that there is some serious attention for your part of the story, even if it is in five or ten years.

Love,

Kyra

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

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