At the same time babies with Congenital diaphragmatic hernia (CDH) receive expert medical care in the Special Delivery Unit (SDU), Newborn/Infant Intensive Care Unit (N/IICU) and post-discharge, our team of clinical coordinators, social workers, child life specialists and psychologists works together to ensure families feel mentally and emotionally supported every step of the way.

After evaluation, this team meets with families to assess their understanding, readiness, coping mechanisms and overall psychosocial situation. Clinical coordinators are our first point of contact. They possess a wealth of CDH experience and can answer any questions a family has, as well as questions from referring physicians. Social workers conduct an initial psychosocial assessment and collaborate with the team psychologist around any stressors, trauma, depressive symptoms or anxiety caused by a family’s medical situation. The psychologist can provide supportive psychotherapy to identify, understand and help balance the emotional toll of the complex pregnancy within the context of other life stressors mothers and families may be experiencing.

Preparing families for their babies' hospitalization

“Although common for us here at CHOP, these are not normal deliveries for most families,” says Joanna Cole, PhD, the team’s clinical psychologist. “CDH babies need to be resuscitated immediately, and it can be quite traumatizing to not know the outcome. We do our best to collectively prepare families for what is to come at a level they can understand, so they feel like they have some form of control.”

Families can tour the SDU and N/IICU, see the type of equipment used when a baby requires ECMO, and see the location of sleep rooms where they may be able to stay during their child’s hospitalization. Social workers and clinical coordinators help navigate the logistics of relocating and assess a family’s need for financial assistance. Child life specialists provide specific information on how to best prepare siblings and support them during the delivery and while their new brother or sister is in the N/IICU. In the event a CDH baby does not survive, they offer additional support for siblings through the Perinatal Palliative and Bereavement Care Program. Often parents ask how best to convey information to their children in a growth and developmentally appropriate manner. Child life specialists are experts in this area. The team connects families to community organizations and supports them through emotional ups and downs. We also offer a Web chat group where families can get information and advice, and interact with each other in an anonymous, non-judgmental environment.

“It’s a supportive community that helps moms interact with other moms who have had similar experiences, and it lets our patients know they have a place to turn for some support and comfort,” says Elizabeth Rozovsky, MSW, LMSW, Center for Fetal Diagnosis and Treatment social worker, and chat group creator and moderator. Families staying at one of the nearby Ronald McDonald Houses can also meet and bond with each other.

Our social workers, child life specialists and psychologists continue to follow families through delivery and into the N/IICU. A special psychosocial team for surgical babies in the N/IICU meets every week to work with families to develop a plan for their child. A child life specialist is also available to help facilitate discussions with siblings about the arrival of the new baby, and will give them the opportunity to ask questions and express their feelings in a safe, supportive environment. The team also comes up with ways to promote family bonding and offers activities like scrapbooking. Lactation consultants, led by world-renowned expert Diane Spatz, PhD, RN-BC, work one-on-one to educate moms about the benefits of  breastfeeding and assist with pumping and oral care. The team also provides support if a baby needs to go on ECMO.

“It can be upsetting for parents to see their baby on ECMO for the first time,” Cole says. “Our team does a wonderful job explaining what the machines are for and partnering with families during this challenging time.”

The psychosocial team’s involvement continues well after discharge, supporting families through the long-term challenges and complications of CDH. The team is also constantly working to create more and better support services for families. In addition to Rozovsky’s Web chat efforts, Cole is currently developing support groups that facilitate relaxation, stress management and coping for families during long stays in the N/IICU.

“Many of the families we see are not from the local area and are left without their normal supports,” says Cole. “We want to do what we can to create the best support system for patients, remaining focused on our mission to provide effective family-centered care for all.”