- Email: [email protected]
Neonatal Transport – A Family Support Module
Neonatal Transport – A Family Support Module Kathy Duritza, RNC, BSN
With the regionalization of perinatal/neonatal care and an increase in the prematurity rate, the number of neonatal transports is also increasing. To help foster a family-centered care environment and establish a trusting relationship between families and staff, the neonatal transport team must provide educational and emotional support materials and services to families throughout the transport process. This article describes a collaborative effort between hospital staff, outside organizations (especially the March of Dimes), community businesses and neonatal graduate families that resulted in the creation of a family support module for neonatal transport. This family support module is comprised of services and resources that can be customized to meet the needs of the regional population served. The idea that all staff at the referring hospital and regional center must be knowledgeable of the information and services being provided to families is discussed. In addition, the need for regular evaluation of materials/programs to insure effectiveness is stressed. Keywords: Neonatal transport; Family-Centered care; Emotional support; March of Dimes; Family support module
Expectant parents joyously look forward to the birth of a healthy infant. Sometimes their hopes and dreams are shattered with the unexpected arrival of a sick or premature infant. Families are often then confronted with devastating circumstances beyond their control and are immersed in a strange world of state-of-the-art equipment, highly specialized doctors and technicians, and a strange new language comprised of medical terms. The transport and hospitalization of an infant in a neonatal intensive care unit (NICU) can be one of the most frightening, confusing and difficult experiences for a family. In an effort to help ease this transition, our hospital in northeast Ohio has collaborated with the March of Dimes to create a resource for families. This paper describes our center's experience with developing, implementing, and evaluating a family support neonatal transport module for our NICU.
Regionalization of Care During World War II, infant mortality rates decreased as women and infants received medical care through the Emergency Maternity and Infant Care Program for dependents of those in the Armed Forces. Unfortunately, when these programs were discontinued after the war, infant mortality rates began to increase. Because of this increasing trend, the medical community was urged to learn more about high-risk From the Akron Children's Hospital, NeuroDevelopment Center, Spasticity Program Coordinator, Akron, OH. From the neonatal intensive care unit at Akron Children's Hospital, Akron, Ohio in collaboration with the March of Dimes. Address correspondence to Kathy Duritza, RNC, BSN, One Perkins Square, Suite 4400, Akron, OH 44308. E-mail: [email protected]. © 2009 Elsevier Inc. All rights reserved. 1527-3369/09/0904-0329$36.00/0 doi:10.1053/j.nainr.2009.09.006
maternal-neonatal care.1 In the 1960′s, the American Medical Association (AMA) developed a committee to focus on the identification, organization and implementation of high-risk perinatal and infant care.1 Then, in 1976, the AMA, the American Academy of Family Physicians, the American Academy of Pediatrics, and the American College of Obstetricians and Gynecologists collaborated to form the Committee on Perinatal Health. Subsequently, the committee, supported by the March of Dimes, published the document, Toward Improving the Outcomes of Pregnancy: Recommendations for the Regional Development of Maternal and Perinatal Health Services.1-4 This document defined regionalization, classified nurseries according to their level of care5 (See Table 1 for a description of the levels of neonatal care), and indicated that regionalization improves specialized services by reducing costly duplication of operation. Therefore, staffing, equipment and services could be focused on the level of care assigned to that institution. Since high-risk patients often require the highest level of care possible, a well trained and organized transport system is integral to regionalized care.1-4,6,7
Increasing Prematurity Rate According to the National Center of Health Statistics (NCHS),8 nearly a half million American infants are born prematurely each year. Statistics from 2003 indicated 12.3% of all infants were born prematurely (less than 37 weeks gestation). This number suggests the rate of premature births has steadily been increasing since tracking began in 1981, when the rate was reported to be 9.4%. To complicate matters even further, the NCHS reports prematurity as the number one cause of infant morbidity and mortality in the first month of life.8 The increased rate of prematurity over the years has consequently increased the need for neonatal transport to a higher level of
Table 1. Descriptions of the Levels of Neonatal Care 5 Level I – Neonatal Care (basic) Well-newborn nursery- organized with personnel and equipment to: - perform neonatal resuscitation -evaluate and provide postnatal care of healthy newborn infants -stabilize and provide care for infants born at 35 to 37 weeks gestation who remain physiologically stable -stabilize newborn infants bornb 35 weeks gestation or will until transfer to a facility that can provide the appropriate level of neonatal care Level II – Neonatal Care (specialty) Special care nursery (two categories) – organized with personnel and equipment to: Level IIA -provide care to infants born atN32 weeks gestation and weighingN1500 grams who have physiologic immaturity such as apnea of prematurity, inability to maintain body temperature, or inability to take oral feedings -provide care to moderately ill infants with problems that are expected to resolve rapidly and are not anticipated to need subspecialty services on an urgent basis -care for infants convalescing from intensive care Level IIB -all capabilities of Level I and Level IIA -have the capability to provide mechanical ventilation for brief durations (b24 hours) or continuous positive airway pressure Level III – Neonatal Intensive Care (subspecialty) Neonatal Intensive Care Unit (NICU) (three categories) – organized with personnel and equipment to: -provide continuous life support and comprehensive care for extremely high-risk newborn infants and those with complex and critical illness Level IIIA -provide care for infants with birth weightN1000 grams andN28 weeks gestation -continuous life support provided but limited to conventional mechanical ventilation Level IIIB -care for extremely low birth weight infants (b1000 grams andb28 weeks gestation) -advanced respiratory care such as high-frequency ventilation and inhaled nitric oxide -prompt and on-site access to a full range of pediatric medical subspecialists -advanced imaging with interpretation on an urgent basis, including computed tomography, magnetic resonance imaging, and echocardiography -pediatric surgical specialists and pediatric anesthesiologists on site or at a closely related institution to perform major surgery Level IIIC -all capabilities of Level IIIB in an institution that can provide ECMO and surgical repair of serious congenital cardiac malformations that require cardiopulmonary bypass. Abbreviations: NICU, neonatal intensive care unit; ECMO, extracorporeal membrane oxygenation.
care. Fortunately, regionalization has provided a way to help address this concern and has facilitated quality state-of-the-art care to more and more compromised infants.
March of Dimes NICU Family Support R In January 2003, the March of Dimes launched their 5-year, $75 million dollar Prematurity Campaign. In keeping with their mission, the March of Dimes committed to educating the public about the problems associated with prematurity and funding research to find the causes of prematurity.9 While the March of Dimes was committed to education and research related to this ever growing problem, they were also committed to offering direct services to the many families that find themselves in the unexpected situation of having their infant in a NICU. In an effort to support these families, the March of Dimes selected
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three Level III regional NICUs across the country to partner in a new program called NICU Family SupportR. The three “pilot” centers selected for this project were: Akron Children's Hospital, Ohio, Children's Hospital of Denver, Colorado, and Greenville Hospital System Children's Hospital, South Carolina. Each site was known to already have an established commitment to family-centered care. The main purpose of the project was to develop educational and emotional support materials and services for NICU families Initially, each site was visited by program staff from the March of Dimes and a needs assessment for each site was completed with input from hospital administration, staff, and NICU graduate parents. Based on the information obtained from the needs assessments, topics were then chosen for each site to develop customized materials/ programs. Akron Children's Hospital was given the opportunity to create a March of Dimes program that supported families through the neonatal transport
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process. The following describes our process of developing, implementing, and evaluating the March of Dimes transport program for our NICU at Akron Children's Hospital.
Getting Started
of grief over the loss of the perfect pregnancy and birth experience. While a family may want to be informed of what is happening and why, the stress of the events can prevent the family from hearing and understanding what is being explained to them.4,11
Seeing and Touching the Baby before Transport
Building a Committee
“When consulted and included, family members with experience in NICUs make valuable contributions to program and policy development.”10 – Beverly H. Johnson, Institute for Family-Centered-Care
The first step in creating the transport program for our NICU was to develop a group of dedicated, visionary people who were passionate about helping families though the NICU experience. Both hospital and NICU staff were quick to volunteer to be a part of this committee. However, it was felt among the NICU staff and the March of Dimes personnel that NICU graduate families would be the most integral members of the group and that firsthand experience would be the best resource for improvement. Working with graduate families and listening to them share their truest feelings and experiences can be an awakening experience for even the most empathetic, experienced NICU staff member. Therefore, a diverse group of graduate NICU parents were invited to be a part of our March of Dimes NICU Family SupportR committee- each bringing different experiences. The committee had representation from nursing (both from the NICU and referring hospitals in the region), chaplaincy, hospital administration, social work, case management, neonatology, child life, transport, respiratory care, outreach education, the March of Dimes, and most importantly- NICU graduate parents.
“They brought her to my room before transporting her. They let me put my hand inside the box so I could touch her- she was so tiny. They were explaining the equipment and what was going to happen, but I honestly don't remember any of it- I just remember seeing my baby. – Vicki, Mom of a 28 Weeker
One of the first improvements to our March of Dimes transport module was a visit to every mother's room prior to the transport of her infant(s). It was felt that even with the most compromised of infants, the family should have the opportunity to see and touch their infant. In many cases, the infant may have been taken from the delivery room for resuscitation before the parents ever got a glimpse of their infant. NICU graduate parents on our committee stressed their desire of wanting information shared with them right away, but they also expressed the need for staff to understand that stress levels may affect their retention of information. They verbalized that it was important for staff members to realize that explanations about equipment, medical diagnosis and plan of care may to be repeated on several different occasions, even after entrance into the NICU.1,3,11,12
Keeping It Simple
Reviewing Current Practices
“It was all so overwhelming. I don't think I looked at anything anyone gave us until three weeks after the boys were in the NICU” – Joanie, Mom of 30 Week Twins
Once the committee was formed, they began their work by reviewing the information that was currently being provided to families in an effort to support them during the transport process. Committee members were eager to applaud and enhance what was working and improve or remove what wasn't helpful. The committee also worked to streamline information and develop new materials. Committee members remained aware that a neonatal transport can throw any family into emotional crisis. Many family members experience some stage
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“They gave me a pamphlet about the NICU with the phone number written on the front, which I loved so I didn't have to look far for the number.” – Tami, Mom of 30 Week Twins
Families on our committee were eager to streamline the amount of written informational materials to just important basics. Group members felt that written materials can be important in providing information to a family, but too much information can be overwhelming. A review of current practice for our center indicated that the transport staff in conjunction with the NICU staff had been providing a folder filled with information about the NICU. The parents on the committee shared that while receiving information was important to them, it just added to an already overwhelming situation because they didn't know which parts of it were really important.
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They suggested only basic essential information be included in the folder of information provided to families at the time of transport. According to the families, important information included directions to the hospital, parking instructions, and the direct phone number to the NICU. Therefore, the committee was able to pull from existing printed hospital materials and streamlined the information in the transport folder.
Breastfeeding
Creating new materials While the committee wanted to keep written materials to a minimum so as to not overwhelm families, they felt there were items that could be created and could be informational without adding to the family's stress. In reviewing the materials that were already being distributed, the committee felt many items could be combined and improved to offer very effective, beneficial information to families.
“Meet Your Baby's Doctor” photo composite “From the very beginning, pumping my milk was so important to me. It was something only I could do for her. The nurses couldn't call the pharmacy for it- it had to come from me.” – Elaine, Mom of a 32 Weeker
Many families may think that because their infant is born ill or premature, the mother will not be able to breastfeed. It is so important, especially in these cases, that mothers be educated and supported to provide pumped milk for their infant.1,6 Specific information on pumping and storing breast milk had already been prepared by the lactation specialists from our NICU. Although the committee found the information to be supportive for the family, they felt there needed to be a commitment from the staff at the referring hospital to make the difference on how successful a mother was on establishing a milk supply. Pumping guidelines and equipment needs were reviewed with hospitals in the region. All were in agreement to consistently support mothers wishing to provide pumped breast milk for their infant.
Maintaining a Connection
“I was given a cloth doll to keep against my skin that would absorb my scent. It helped me feel like I was doing something for her even before I could go to the NICU.” – Kim, Mom of a 40 Weeker
In an effort to maintain a connection between mother and infant, our committee encouraged the continued use of the Snoedel (Philips Children's Medical Ventures, Monroeville, PA). At Akron Children's Hospital, the transport team gives a Snoedel to each family at the time of transport. A Snoedel is a cloth doll made of cotton and wool. Mothers are asked to sleep with it against their skin and the material will absorb her scent. The doll is then placed in the infant's incubator when the mother is able to come to the NICU. The committee, especially the parents, felt that the Snoedel played an important role in promoting bonding between mother and infant.
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“There were so many people doing so many different things. We just wanted to understand who everyone was and exactly who was in charge. It was hard to tell who the doctor was”. – Cristina, Mom of 29 Week Triplets
It is so important for families to know who is caring for their infant. There can be such a flurry of activity during a transport and even more when the family gets to the NICU. The NICU is a foreign place to most families filled with strangers that they must depend on to care for their fragile infant. Families on our committee shared that they especially wanted to know their infant's doctor. As a result, the committee created a photo composite with pictures of all of the neonatologists. The composite also included a description of some of the other professionals that are a part of the NICU care team and stated, “You, as a parent, are a very important member of the team, too.” It is vital for families to know from the beginning that they are an integral part of the health care team.1,3 Each family receives this informational sheet at the time of transport. The transport team staff meeting with the family indicates which neonatologist will be at the hospital to coordinate care for their infant when he/she arrives in the NICU. Each referring hospital also has copies of the composite to refer to as needed. In addition, the neonatologists and nurse practitioners in the NICU have found this to be a useful tool when talking with families on the perinatal units at the referring hospitals.
Answering Common Questions
“Many families ask the same questions. Having the answers to the basic questions written out for families could help with reinforcing the information.” – Donna, Case Manager/Maternal-Fetal Treatment Center
Many families ask the same questions regarding the transport process. Whether the transport is unexpected or something that
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a family has planned for because of a known high-risk pregnancy or pre-diagnosed fetal complication, many of the questions are the same. Having the questions/answers in writing can help the family be better informed. It also assures that consistent information is being provided to families. Using this information, the committee created a brochure that included the most frequently asked questions and answers. Table 2 lists the frequently asked questions from our brochure. The brochure also shows a picture of a transport ambulance and a picture of the transport team bringing a baby to the NICU in a transport incubator. This allows the families to get a sense for some of the equipment that may be utilized for their infant. The brochure has been reported to be a useful education tool in our fetal treatment center, high-risk perinatal offices, referring hospitals and by the transport team at the time of transport.
Calling Back
Creating New Services We only get one opportunity to make a first impression. Being sensitive to the informational and emotional needs of a family during a neonatal transport is imperative.11 The transport team members, in most cases, are the first line representatives of the hospital and must act in a caring, sensitive and professional manner.1 The committee wanted to add direct service items to the transport process that would offer emotional support to families.
Facilitating Photography
“They gave me the pictures of them to keep, which I kept at my bedside and kissed goodnight every night until they came home to us.” – Tiffany, Mom of 29 Week Twins
Pictures are such an important part of our lives. They help us preserve our memories and allow us to share important
Table 2. Frequently Asked Questions from Transport Brochure at Akron Children's Hospital Why does my baby need to be transported? How will my baby get there? Who will transport my baby? What is done to get my baby ready for transport? Will I see my baby before transport? May a family member go with the baby when transported? How long will it take for my baby to get to the NICU? May I speak with staff caring for my baby in the NICU? How will I provide milk for my baby? What can I do for my baby while we are separated? Abbreviations: NICU, neonatal intensive care unit.
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moments in our life with others. With so much happening during a high risk delivery and neonatal transport, the committee wanted to stress how important a photograph can be for a family. In an effort to provide families with a photo of their new infant, instant cameras were purchased for the transport team to take on each trip. One of the transport team members takes a picture of the infant before going to talk with the family. Sharing a photo with the family can help build trust between the staff and family letting them know that the staff recognizes the importance of the family in the infant's life. A photo can also be a source of affirmation of the birth, especially for mothers who may be too medicated to be aware of everything that has happened.1,3
“I would have appreciated knowing when they had arrived safe and sound at the NICU. I had to call a few hours later because my husband didn't call me either- we were all so crazed!!!” – Kristen, Mom of a 33 Weeker
The committee felt it was important to maintain contact with the referral hospital especially upon arrival to the NICU. Therefore, once an infant arrives in the NICU, the unit secretary calls the referring hospital to let them know that the transport team and the infant have arrived safely to the NICU. This phone call is meant to be a courtesy to the family and referring staff. The call is made whether the transport originated at a hospital a few minutes or a few hours away. Although the secretary may not be able to provide detailed information on the infant's medical condition, she is able to give the family and staff comfort in knowing that the team has arrived safely and can offer an idea of when someone caring for the infant will be calling with more detailed information.
Providing Nutrition and Rest
“The whole day is just a blur. We went to a routine OB visit that day, got rushed to the hospital, and my son was born. He then got transported to a hospital over two hours away.” – Alan, Dad of a 32 Weeker
This is the scenario described by many NICU families. Regional medical centers receive infants from blocks, to cities, to even states away. Families can feel torn and unsure of whether to stay with the mother or go to the NICU with
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the infant. To help ease this stress, the committee developed ways to help families with the basic necessities of life…food, and rest. Cafeteria Cash Families can arrive in the NICU after a transport without any money in their pocket. Depending on the events of the day, many have not had anything to eat or drink for a while. The committee felt that providing even a small level of nutrition for the family during this stressful time was very important. As a result, each family that enters the NICU is given a “cafeteria cash” coupon that allows them to go to the hospital cafeteria to get some food. The coupon can be used anytime during the NICU stay. Hotel/Restaurant List Many regional medical centers are fortunate to have designated sleep space for families or be affiliated with organizations that provide space for families to stay. As wonderful as these resources can be, their space and hours of operation can be restrictive. A neonatal transport can occur anytime of the day or night. An exhausted family can arrive at the hospital and have nowhere to stay. To help obtain a resting place for a family when needed, our committee sent letters to the managers/owners of area hotels and restaurants asking for their support in providing respite for these families. Many area hotels were eager to partner with our NICU and offer either sizable discounts, or in some cases, a free room. Restaurants, too, offered discounts to NICU families and even free meals. A resource binder was created by committee members and is kept in the NICU. NICU staff members can refer to this binder anytime resources are needed for a family. Letters continue to be sent annually to area restaurants/hotels asking for their continued support of the program.
It's Only Good If People Use It Education of the NICU staff, transport team and the staff at the referring hospitals in the region was essential for the success of this family support module. The materials and support services created were only going to be useful to families if the staff were aware of them and knew what their role was in the implementation of the program. Components of the March of Dimes Transport Program developed at Akron Children's Hospital were presented to NICU staff and the transport team at staff meetings and education competencies as they were developed. The new materials/services were presented to the referring hospitals at quarterly perinatal meetings. This allowed face-to-face time with regional hospital leadership to explain the new materials/services. Direct outreach education of the staff at the referring hospitals was also offered. Since it frequently is one of the referral staff members that takes on the primary role of supporting the family during the transport process, it was essential that they have a complete understand-
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ing of the resources made available to families through this transport module.4,10
Review and Improve Although the committee has changed and evolved over the years, it remains committed to offering educational and emotional support materials to families who find themselves involved in a NICU experience. The materials described in this article are reviewed and revised annually by the advisory committee to insure their effectiveness. Thanks to the support of the March of Dimes, many other programs have been developed to support families at our hospital. The programs and/or their components developed at the original three “pilot” NICUs have been rolled out to over 74 hospitals across the country through March of Dimes NICU Family SupportR. Each hospital has the opportunity to customize the modules to meet the needs of the population it serves.
Conclusion Family-centered-care is not an option- it is a standard of care that must be present throughout a family‘s NICU experience and when possible, even before the high risk infant is born. By partnering with outside organizations, community resources and NICU graduate families we can create customized support materials and services for the population that we serve. Technologies and equipment will change, but the one invaluable resource that will remain is the experience offered from a NICU graduate family. May we always integrate families as advisors as we all work to improve care in our NICUs.
Acknowledgments The author would like to thank Liza Cooper and Kara Gilardi from the March of Dimes for their support and guidance with this article.
References 1. Bagwell G, Acress C, Karlsen K, et al. Regionalization in today's health care delivery system. In: Kenner C, Lott JW, editors. Comprehensive neonatal nursing: a physiologic perspective. Missouri: St. Louis; 2003. p. 16-37. 2. Walsh MC, Fanaroff AA. Perinatal services. In: Martin R, Fanaroff A, Walsh M, editors. Neonatal-perinatal medicine – diseases of the fetus and infant. Philadelphia (Pa): Mosby; 2006. p. 25-32. 3. Pettett G, Sewell S, Merenstein G. Regionalization and transport in perinatal care. In: Merenstein G, Gardner S, editors. Handbook of neonatal intensive care. St. Louis: Missouri: Mosby; 2002. p. 31-44.
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4. Wood K, Bose C. Neonatal transport. In: MacDonald M, Seshia M, Mullett M, editors. Neonatology pathophysiology and management of the newborn. Philadelphia (Pa): Lippincott Williams and Wilkins; 2005. p. 40-49. 5. Stark AR, Couto J. American Academy of Pediatrics Committee on Fetus and Newborn: Levels of Neonatal Care. Pediatrics. 2004;114:1341. 6. D'Harlingue A, Durand D. Recognition, stabilization, and transport of the high-risk newborn. In: Klaus M, Fanaroff A, editors. Care of the high-risk neonate. Philadelphia (Pa): WBSanders Company; 2001. p. 93-96. 7. Pettet G, Merenstein G. Transport of ventilated infants. In: Goldsmith J, Karotkin E, editors. Assisted ventilation of the neonate. Philadelphia (Pa): Sanders; 2003. p. 479-488.
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8. March of Dimes. Number of babies born prematurely nears historic half million mark in U.S. Available at: www. marchofdimes.com; 2005. 9. March of Dimes. March of dimes launches new fight against prematurity. Available at: www.marchofdimes.com; 2003. 10. Johnson B. Newborn intensive care units pioneer familycentered change in hospitals across the country. Zero to Three. 1995;15:11-17. 11. Healy P. The benefits of specialized neonatal transport teams: effects on the infants and their parents. J Neonatal Nurs. 2003;9:98-101. 12. Linden DW, Paroli ET, Doron MW. Preemies–the essential guide for parents of premature babies. New York (NY): Pocket Books; 2000. p. 64-66.
VOLUME 9, NUMBER 4, www.nainr.com
With the regionalization of perinatal/neonatal care and an increase in the prematurity rate, the number of neonatal transports is also increasing. To help foster a family-centered care environment and establish a trusting relationship between families and staff, the neonatal transport team must provide educational and emotional support materials and services to families throughout the transport process. This article describes a collaborative effort between hospital staff, outside organizations (especially the March of Dimes), community businesses and neonatal graduate families that resulted in the creation of a family support module for neonatal transport. This family support module is comprised of services and resources that can be customized to meet the needs of the regional population served. The idea that all staff at the referring hospital and regional center must be knowledgeable of the information and services being provided to families is discussed. In addition, the need for regular evaluation of materials/programs to insure effectiveness is stressed. Keywords: Neonatal transport; Family-Centered care; Emotional support; March of Dimes; Family support module
Expectant parents joyously look forward to the birth of a healthy infant. Sometimes their hopes and dreams are shattered with the unexpected arrival of a sick or premature infant. Families are often then confronted with devastating circumstances beyond their control and are immersed in a strange world of state-of-the-art equipment, highly specialized doctors and technicians, and a strange new language comprised of medical terms. The transport and hospitalization of an infant in a neonatal intensive care unit (NICU) can be one of the most frightening, confusing and difficult experiences for a family. In an effort to help ease this transition, our hospital in northeast Ohio has collaborated with the March of Dimes to create a resource for families. This paper describes our center's experience with developing, implementing, and evaluating a family support neonatal transport module for our NICU.
Regionalization of Care During World War II, infant mortality rates decreased as women and infants received medical care through the Emergency Maternity and Infant Care Program for dependents of those in the Armed Forces. Unfortunately, when these programs were discontinued after the war, infant mortality rates began to increase. Because of this increasing trend, the medical community was urged to learn more about high-risk From the Akron Children's Hospital, NeuroDevelopment Center, Spasticity Program Coordinator, Akron, OH. From the neonatal intensive care unit at Akron Children's Hospital, Akron, Ohio in collaboration with the March of Dimes. Address correspondence to Kathy Duritza, RNC, BSN, One Perkins Square, Suite 4400, Akron, OH 44308. E-mail: [email protected]. © 2009 Elsevier Inc. All rights reserved. 1527-3369/09/0904-0329$36.00/0 doi:10.1053/j.nainr.2009.09.006
maternal-neonatal care.1 In the 1960′s, the American Medical Association (AMA) developed a committee to focus on the identification, organization and implementation of high-risk perinatal and infant care.1 Then, in 1976, the AMA, the American Academy of Family Physicians, the American Academy of Pediatrics, and the American College of Obstetricians and Gynecologists collaborated to form the Committee on Perinatal Health. Subsequently, the committee, supported by the March of Dimes, published the document, Toward Improving the Outcomes of Pregnancy: Recommendations for the Regional Development of Maternal and Perinatal Health Services.1-4 This document defined regionalization, classified nurseries according to their level of care5 (See Table 1 for a description of the levels of neonatal care), and indicated that regionalization improves specialized services by reducing costly duplication of operation. Therefore, staffing, equipment and services could be focused on the level of care assigned to that institution. Since high-risk patients often require the highest level of care possible, a well trained and organized transport system is integral to regionalized care.1-4,6,7
Increasing Prematurity Rate According to the National Center of Health Statistics (NCHS),8 nearly a half million American infants are born prematurely each year. Statistics from 2003 indicated 12.3% of all infants were born prematurely (less than 37 weeks gestation). This number suggests the rate of premature births has steadily been increasing since tracking began in 1981, when the rate was reported to be 9.4%. To complicate matters even further, the NCHS reports prematurity as the number one cause of infant morbidity and mortality in the first month of life.8 The increased rate of prematurity over the years has consequently increased the need for neonatal transport to a higher level of
Table 1. Descriptions of the Levels of Neonatal Care 5 Level I – Neonatal Care (basic) Well-newborn nursery- organized with personnel and equipment to: - perform neonatal resuscitation -evaluate and provide postnatal care of healthy newborn infants -stabilize and provide care for infants born at 35 to 37 weeks gestation who remain physiologically stable -stabilize newborn infants bornb 35 weeks gestation or will until transfer to a facility that can provide the appropriate level of neonatal care Level II – Neonatal Care (specialty) Special care nursery (two categories) – organized with personnel and equipment to: Level IIA -provide care to infants born atN32 weeks gestation and weighingN1500 grams who have physiologic immaturity such as apnea of prematurity, inability to maintain body temperature, or inability to take oral feedings -provide care to moderately ill infants with problems that are expected to resolve rapidly and are not anticipated to need subspecialty services on an urgent basis -care for infants convalescing from intensive care Level IIB -all capabilities of Level I and Level IIA -have the capability to provide mechanical ventilation for brief durations (b24 hours) or continuous positive airway pressure Level III – Neonatal Intensive Care (subspecialty) Neonatal Intensive Care Unit (NICU) (three categories) – organized with personnel and equipment to: -provide continuous life support and comprehensive care for extremely high-risk newborn infants and those with complex and critical illness Level IIIA -provide care for infants with birth weightN1000 grams andN28 weeks gestation -continuous life support provided but limited to conventional mechanical ventilation Level IIIB -care for extremely low birth weight infants (b1000 grams andb28 weeks gestation) -advanced respiratory care such as high-frequency ventilation and inhaled nitric oxide -prompt and on-site access to a full range of pediatric medical subspecialists -advanced imaging with interpretation on an urgent basis, including computed tomography, magnetic resonance imaging, and echocardiography -pediatric surgical specialists and pediatric anesthesiologists on site or at a closely related institution to perform major surgery Level IIIC -all capabilities of Level IIIB in an institution that can provide ECMO and surgical repair of serious congenital cardiac malformations that require cardiopulmonary bypass. Abbreviations: NICU, neonatal intensive care unit; ECMO, extracorporeal membrane oxygenation.
care. Fortunately, regionalization has provided a way to help address this concern and has facilitated quality state-of-the-art care to more and more compromised infants.
March of Dimes NICU Family Support R In January 2003, the March of Dimes launched their 5-year, $75 million dollar Prematurity Campaign. In keeping with their mission, the March of Dimes committed to educating the public about the problems associated with prematurity and funding research to find the causes of prematurity.9 While the March of Dimes was committed to education and research related to this ever growing problem, they were also committed to offering direct services to the many families that find themselves in the unexpected situation of having their infant in a NICU. In an effort to support these families, the March of Dimes selected
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three Level III regional NICUs across the country to partner in a new program called NICU Family SupportR. The three “pilot” centers selected for this project were: Akron Children's Hospital, Ohio, Children's Hospital of Denver, Colorado, and Greenville Hospital System Children's Hospital, South Carolina. Each site was known to already have an established commitment to family-centered care. The main purpose of the project was to develop educational and emotional support materials and services for NICU families Initially, each site was visited by program staff from the March of Dimes and a needs assessment for each site was completed with input from hospital administration, staff, and NICU graduate parents. Based on the information obtained from the needs assessments, topics were then chosen for each site to develop customized materials/ programs. Akron Children's Hospital was given the opportunity to create a March of Dimes program that supported families through the neonatal transport
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process. The following describes our process of developing, implementing, and evaluating the March of Dimes transport program for our NICU at Akron Children's Hospital.
Getting Started
of grief over the loss of the perfect pregnancy and birth experience. While a family may want to be informed of what is happening and why, the stress of the events can prevent the family from hearing and understanding what is being explained to them.4,11
Seeing and Touching the Baby before Transport
Building a Committee
“When consulted and included, family members with experience in NICUs make valuable contributions to program and policy development.”10 – Beverly H. Johnson, Institute for Family-Centered-Care
The first step in creating the transport program for our NICU was to develop a group of dedicated, visionary people who were passionate about helping families though the NICU experience. Both hospital and NICU staff were quick to volunteer to be a part of this committee. However, it was felt among the NICU staff and the March of Dimes personnel that NICU graduate families would be the most integral members of the group and that firsthand experience would be the best resource for improvement. Working with graduate families and listening to them share their truest feelings and experiences can be an awakening experience for even the most empathetic, experienced NICU staff member. Therefore, a diverse group of graduate NICU parents were invited to be a part of our March of Dimes NICU Family SupportR committee- each bringing different experiences. The committee had representation from nursing (both from the NICU and referring hospitals in the region), chaplaincy, hospital administration, social work, case management, neonatology, child life, transport, respiratory care, outreach education, the March of Dimes, and most importantly- NICU graduate parents.
“They brought her to my room before transporting her. They let me put my hand inside the box so I could touch her- she was so tiny. They were explaining the equipment and what was going to happen, but I honestly don't remember any of it- I just remember seeing my baby. – Vicki, Mom of a 28 Weeker
One of the first improvements to our March of Dimes transport module was a visit to every mother's room prior to the transport of her infant(s). It was felt that even with the most compromised of infants, the family should have the opportunity to see and touch their infant. In many cases, the infant may have been taken from the delivery room for resuscitation before the parents ever got a glimpse of their infant. NICU graduate parents on our committee stressed their desire of wanting information shared with them right away, but they also expressed the need for staff to understand that stress levels may affect their retention of information. They verbalized that it was important for staff members to realize that explanations about equipment, medical diagnosis and plan of care may to be repeated on several different occasions, even after entrance into the NICU.1,3,11,12
Keeping It Simple
Reviewing Current Practices
“It was all so overwhelming. I don't think I looked at anything anyone gave us until three weeks after the boys were in the NICU” – Joanie, Mom of 30 Week Twins
Once the committee was formed, they began their work by reviewing the information that was currently being provided to families in an effort to support them during the transport process. Committee members were eager to applaud and enhance what was working and improve or remove what wasn't helpful. The committee also worked to streamline information and develop new materials. Committee members remained aware that a neonatal transport can throw any family into emotional crisis. Many family members experience some stage
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“They gave me a pamphlet about the NICU with the phone number written on the front, which I loved so I didn't have to look far for the number.” – Tami, Mom of 30 Week Twins
Families on our committee were eager to streamline the amount of written informational materials to just important basics. Group members felt that written materials can be important in providing information to a family, but too much information can be overwhelming. A review of current practice for our center indicated that the transport staff in conjunction with the NICU staff had been providing a folder filled with information about the NICU. The parents on the committee shared that while receiving information was important to them, it just added to an already overwhelming situation because they didn't know which parts of it were really important.
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They suggested only basic essential information be included in the folder of information provided to families at the time of transport. According to the families, important information included directions to the hospital, parking instructions, and the direct phone number to the NICU. Therefore, the committee was able to pull from existing printed hospital materials and streamlined the information in the transport folder.
Breastfeeding
Creating new materials While the committee wanted to keep written materials to a minimum so as to not overwhelm families, they felt there were items that could be created and could be informational without adding to the family's stress. In reviewing the materials that were already being distributed, the committee felt many items could be combined and improved to offer very effective, beneficial information to families.
“Meet Your Baby's Doctor” photo composite “From the very beginning, pumping my milk was so important to me. It was something only I could do for her. The nurses couldn't call the pharmacy for it- it had to come from me.” – Elaine, Mom of a 32 Weeker
Many families may think that because their infant is born ill or premature, the mother will not be able to breastfeed. It is so important, especially in these cases, that mothers be educated and supported to provide pumped milk for their infant.1,6 Specific information on pumping and storing breast milk had already been prepared by the lactation specialists from our NICU. Although the committee found the information to be supportive for the family, they felt there needed to be a commitment from the staff at the referring hospital to make the difference on how successful a mother was on establishing a milk supply. Pumping guidelines and equipment needs were reviewed with hospitals in the region. All were in agreement to consistently support mothers wishing to provide pumped breast milk for their infant.
Maintaining a Connection
“I was given a cloth doll to keep against my skin that would absorb my scent. It helped me feel like I was doing something for her even before I could go to the NICU.” – Kim, Mom of a 40 Weeker
In an effort to maintain a connection between mother and infant, our committee encouraged the continued use of the Snoedel (Philips Children's Medical Ventures, Monroeville, PA). At Akron Children's Hospital, the transport team gives a Snoedel to each family at the time of transport. A Snoedel is a cloth doll made of cotton and wool. Mothers are asked to sleep with it against their skin and the material will absorb her scent. The doll is then placed in the infant's incubator when the mother is able to come to the NICU. The committee, especially the parents, felt that the Snoedel played an important role in promoting bonding between mother and infant.
NEWBORN
“There were so many people doing so many different things. We just wanted to understand who everyone was and exactly who was in charge. It was hard to tell who the doctor was”. – Cristina, Mom of 29 Week Triplets
It is so important for families to know who is caring for their infant. There can be such a flurry of activity during a transport and even more when the family gets to the NICU. The NICU is a foreign place to most families filled with strangers that they must depend on to care for their fragile infant. Families on our committee shared that they especially wanted to know their infant's doctor. As a result, the committee created a photo composite with pictures of all of the neonatologists. The composite also included a description of some of the other professionals that are a part of the NICU care team and stated, “You, as a parent, are a very important member of the team, too.” It is vital for families to know from the beginning that they are an integral part of the health care team.1,3 Each family receives this informational sheet at the time of transport. The transport team staff meeting with the family indicates which neonatologist will be at the hospital to coordinate care for their infant when he/she arrives in the NICU. Each referring hospital also has copies of the composite to refer to as needed. In addition, the neonatologists and nurse practitioners in the NICU have found this to be a useful tool when talking with families on the perinatal units at the referring hospitals.
Answering Common Questions
“Many families ask the same questions. Having the answers to the basic questions written out for families could help with reinforcing the information.” – Donna, Case Manager/Maternal-Fetal Treatment Center
Many families ask the same questions regarding the transport process. Whether the transport is unexpected or something that
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a family has planned for because of a known high-risk pregnancy or pre-diagnosed fetal complication, many of the questions are the same. Having the questions/answers in writing can help the family be better informed. It also assures that consistent information is being provided to families. Using this information, the committee created a brochure that included the most frequently asked questions and answers. Table 2 lists the frequently asked questions from our brochure. The brochure also shows a picture of a transport ambulance and a picture of the transport team bringing a baby to the NICU in a transport incubator. This allows the families to get a sense for some of the equipment that may be utilized for their infant. The brochure has been reported to be a useful education tool in our fetal treatment center, high-risk perinatal offices, referring hospitals and by the transport team at the time of transport.
Calling Back
Creating New Services We only get one opportunity to make a first impression. Being sensitive to the informational and emotional needs of a family during a neonatal transport is imperative.11 The transport team members, in most cases, are the first line representatives of the hospital and must act in a caring, sensitive and professional manner.1 The committee wanted to add direct service items to the transport process that would offer emotional support to families.
Facilitating Photography
“They gave me the pictures of them to keep, which I kept at my bedside and kissed goodnight every night until they came home to us.” – Tiffany, Mom of 29 Week Twins
Pictures are such an important part of our lives. They help us preserve our memories and allow us to share important
Table 2. Frequently Asked Questions from Transport Brochure at Akron Children's Hospital Why does my baby need to be transported? How will my baby get there? Who will transport my baby? What is done to get my baby ready for transport? Will I see my baby before transport? May a family member go with the baby when transported? How long will it take for my baby to get to the NICU? May I speak with staff caring for my baby in the NICU? How will I provide milk for my baby? What can I do for my baby while we are separated? Abbreviations: NICU, neonatal intensive care unit.
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moments in our life with others. With so much happening during a high risk delivery and neonatal transport, the committee wanted to stress how important a photograph can be for a family. In an effort to provide families with a photo of their new infant, instant cameras were purchased for the transport team to take on each trip. One of the transport team members takes a picture of the infant before going to talk with the family. Sharing a photo with the family can help build trust between the staff and family letting them know that the staff recognizes the importance of the family in the infant's life. A photo can also be a source of affirmation of the birth, especially for mothers who may be too medicated to be aware of everything that has happened.1,3
“I would have appreciated knowing when they had arrived safe and sound at the NICU. I had to call a few hours later because my husband didn't call me either- we were all so crazed!!!” – Kristen, Mom of a 33 Weeker
The committee felt it was important to maintain contact with the referral hospital especially upon arrival to the NICU. Therefore, once an infant arrives in the NICU, the unit secretary calls the referring hospital to let them know that the transport team and the infant have arrived safely to the NICU. This phone call is meant to be a courtesy to the family and referring staff. The call is made whether the transport originated at a hospital a few minutes or a few hours away. Although the secretary may not be able to provide detailed information on the infant's medical condition, she is able to give the family and staff comfort in knowing that the team has arrived safely and can offer an idea of when someone caring for the infant will be calling with more detailed information.
Providing Nutrition and Rest
“The whole day is just a blur. We went to a routine OB visit that day, got rushed to the hospital, and my son was born. He then got transported to a hospital over two hours away.” – Alan, Dad of a 32 Weeker
This is the scenario described by many NICU families. Regional medical centers receive infants from blocks, to cities, to even states away. Families can feel torn and unsure of whether to stay with the mother or go to the NICU with
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the infant. To help ease this stress, the committee developed ways to help families with the basic necessities of life…food, and rest. Cafeteria Cash Families can arrive in the NICU after a transport without any money in their pocket. Depending on the events of the day, many have not had anything to eat or drink for a while. The committee felt that providing even a small level of nutrition for the family during this stressful time was very important. As a result, each family that enters the NICU is given a “cafeteria cash” coupon that allows them to go to the hospital cafeteria to get some food. The coupon can be used anytime during the NICU stay. Hotel/Restaurant List Many regional medical centers are fortunate to have designated sleep space for families or be affiliated with organizations that provide space for families to stay. As wonderful as these resources can be, their space and hours of operation can be restrictive. A neonatal transport can occur anytime of the day or night. An exhausted family can arrive at the hospital and have nowhere to stay. To help obtain a resting place for a family when needed, our committee sent letters to the managers/owners of area hotels and restaurants asking for their support in providing respite for these families. Many area hotels were eager to partner with our NICU and offer either sizable discounts, or in some cases, a free room. Restaurants, too, offered discounts to NICU families and even free meals. A resource binder was created by committee members and is kept in the NICU. NICU staff members can refer to this binder anytime resources are needed for a family. Letters continue to be sent annually to area restaurants/hotels asking for their continued support of the program.
It's Only Good If People Use It Education of the NICU staff, transport team and the staff at the referring hospitals in the region was essential for the success of this family support module. The materials and support services created were only going to be useful to families if the staff were aware of them and knew what their role was in the implementation of the program. Components of the March of Dimes Transport Program developed at Akron Children's Hospital were presented to NICU staff and the transport team at staff meetings and education competencies as they were developed. The new materials/services were presented to the referring hospitals at quarterly perinatal meetings. This allowed face-to-face time with regional hospital leadership to explain the new materials/services. Direct outreach education of the staff at the referring hospitals was also offered. Since it frequently is one of the referral staff members that takes on the primary role of supporting the family during the transport process, it was essential that they have a complete understand-
NEWBORN
ing of the resources made available to families through this transport module.4,10
Review and Improve Although the committee has changed and evolved over the years, it remains committed to offering educational and emotional support materials to families who find themselves involved in a NICU experience. The materials described in this article are reviewed and revised annually by the advisory committee to insure their effectiveness. Thanks to the support of the March of Dimes, many other programs have been developed to support families at our hospital. The programs and/or their components developed at the original three “pilot” NICUs have been rolled out to over 74 hospitals across the country through March of Dimes NICU Family SupportR. Each hospital has the opportunity to customize the modules to meet the needs of the population it serves.
Conclusion Family-centered-care is not an option- it is a standard of care that must be present throughout a family‘s NICU experience and when possible, even before the high risk infant is born. By partnering with outside organizations, community resources and NICU graduate families we can create customized support materials and services for the population that we serve. Technologies and equipment will change, but the one invaluable resource that will remain is the experience offered from a NICU graduate family. May we always integrate families as advisors as we all work to improve care in our NICUs.
Acknowledgments The author would like to thank Liza Cooper and Kara Gilardi from the March of Dimes for their support and guidance with this article.
References 1. Bagwell G, Acress C, Karlsen K, et al. Regionalization in today's health care delivery system. In: Kenner C, Lott JW, editors. Comprehensive neonatal nursing: a physiologic perspective. Missouri: St. Louis; 2003. p. 16-37. 2. Walsh MC, Fanaroff AA. Perinatal services. In: Martin R, Fanaroff A, Walsh M, editors. Neonatal-perinatal medicine – diseases of the fetus and infant. Philadelphia (Pa): Mosby; 2006. p. 25-32. 3. Pettett G, Sewell S, Merenstein G. Regionalization and transport in perinatal care. In: Merenstein G, Gardner S, editors. Handbook of neonatal intensive care. St. Louis: Missouri: Mosby; 2002. p. 31-44.
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4. Wood K, Bose C. Neonatal transport. In: MacDonald M, Seshia M, Mullett M, editors. Neonatology pathophysiology and management of the newborn. Philadelphia (Pa): Lippincott Williams and Wilkins; 2005. p. 40-49. 5. Stark AR, Couto J. American Academy of Pediatrics Committee on Fetus and Newborn: Levels of Neonatal Care. Pediatrics. 2004;114:1341. 6. D'Harlingue A, Durand D. Recognition, stabilization, and transport of the high-risk newborn. In: Klaus M, Fanaroff A, editors. Care of the high-risk neonate. Philadelphia (Pa): WBSanders Company; 2001. p. 93-96. 7. Pettet G, Merenstein G. Transport of ventilated infants. In: Goldsmith J, Karotkin E, editors. Assisted ventilation of the neonate. Philadelphia (Pa): Sanders; 2003. p. 479-488.
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8. March of Dimes. Number of babies born prematurely nears historic half million mark in U.S. Available at: www. marchofdimes.com; 2005. 9. March of Dimes. March of dimes launches new fight against prematurity. Available at: www.marchofdimes.com; 2003. 10. Johnson B. Newborn intensive care units pioneer familycentered change in hospitals across the country. Zero to Three. 1995;15:11-17. 11. Healy P. The benefits of specialized neonatal transport teams: effects on the infants and their parents. J Neonatal Nurs. 2003;9:98-101. 12. Linden DW, Paroli ET, Doron MW. Preemies–the essential guide for parents of premature babies. New York (NY): Pocket Books; 2000. p. 64-66.
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