Pregnancy after an HIE diagnosis can bring forward a complicated mix of emotions—hope and fear, grief and joy, confidence, and anxiety—all at the same time. In this Peer Perspective panel, Hope for HIE social worker, Jen Schafer, was joined by community members Sarah and Suzi, who shared their lived experiences navigating pregnancy, birth, and family life after HIE.
As with all Peer Perspective conversations, this panel is not medical advice. Instead, it reflects the reality that there is no single “right” way to feel, decide, or move forward. Below are key takeaways from this powerful and honest discussion.
We're sharing the key notes from the Peer Perspective Panel, along with a link to the full video on YouTube.
For many families, the idea of another pregnancy after HIE is not something that happens quickly—or even intentionally. Panelists shared that readiness often came only after a sense of stability returned, whether that meant their child’s medical needs became more manageable or they finally felt able to “take a breath.” For others, it can take years before there is enough emotional or physical bandwidth to even consider growing their family again. Partners may not always reach readiness at the same time, which can add complexity to an already emotional decision. Open communication, patience, and sometimes professional support can be essential as couples navigate this process together.
Both parents shared that while trying to conceive felt manageable, fear surged once pregnancy was confirmed. Pregnancy after HIE can reawaken trauma in unexpected ways, including heightened anxiety, panic attacks, and intrusive thoughts. Medical appointments, ultrasounds, and even everyday triggers—such as television shows or conversations—can suddenly feel overwhelming. Both parents described living scan-to-scan, holding their breath for reassurance, and bracing for the possibility that something could go wrong again.
Both parents spoke openly about how awareness of everything that could go wrong led them to advocate differently in subsequent pregnancies. They sought additional scans, testing, or consultations even when they were not considered medically high risk. Finding providers who listened, validated past trauma, and respected emotional needs made a significant difference. Advocacy sometimes meant changing doctors, hospitals, or insurance plans, requesting extra monitoring, or clearly communicating fears and expectations around delivery. While exhausting, self-advocacy was often a key part of feeling safer during pregnancy.
After experiencing HIE, both parents shared a strong desire to control every possible variable in a future pregnancy. Planning, researching, and preparing often became ways to feel safe again. At the same time, panelists acknowledged the painful reality that control has limits. Even the most carefully laid plans can change unexpectedly, and learning to hold both preparation and uncertainty is an ongoing challenge. This tension—between wanting control and knowing it is never absolute—is a common and deeply human response to trauma.
Sarah and Suzi both described emotionally protecting themselves during pregnancy by delaying bonding, avoiding nursery preparations, or holding back excitement until they felt more certain their baby would be okay. This emotional guardedness is a common trauma response and not a reflection of love or commitment. Pregnancy after HIE may look quieter, more cautious, or more reserved—and that is valid. There is no single “right” way to connect during this time.
For some families, experiencing a calm or “textbook” birth after HIE felt deeply healing. At the same time, that healing experience could also open the door to profound grief as parents realized what they had missed the first time. One panelist described the postpartum period as emotionally intense, with joy and loss existing side by side. Hormonal shifts often amplified these feelings, making it difficult to anticipate just how complex the emotional aftermath could be.
Parents discussed how families with children with disabilities often face societal judgment when deciding to have another child. Questions about risk, capacity, or fairness—though sometimes well-intentioned—can feel isolating and invalidating. Panelists emphasized that having a child with HIE does not remove a family’s right to dream about and build the family they envisioned. While logistical challenges such as caregiving demands and scheduling can feel overwhelming at first, families consistently find ways to adapt and grow into their new rhythms.
Sibling relationships may not always look typical, but they can be deeply meaningful. Parents shared moments of quiet understanding, creativity, and connection between siblings—whether through shared routines, silent companionship, or learning to navigate the world together in unique ways. These relationships often reflect resilience, empathy, and adaptability, offering unexpected moments of joy and growth.
Support during pregnancy and postpartum looked different for each family. One parent chose to delay sharing pregnancy news, protecting themselves from judgment or added emotional pressure. The other leaned on a small circle of trusted friends who knew their journey and could offer encouragement without expectations. While the intensity of medical support may lessen with subsequent children, emotional support remains essential. Parents emphasized that asking for check-ins, reassurance, or space is also a powerful form of self-advocacy.
One of the strongest messages from this panel was the importance of self-compassion. Many parents carry guilt—wondering if something they did caused their child’s injury or fearing they could prevent future harm. While healthy habits and preparation can feel empowering, parents are not responsible for controlling every outcome. Pregnancy after HIE requires bravery, gentleness, and permission to experience conflicting emotions without judgment.
Panelists highlighted several resources that supported them along the way:
If you need help navigating resources in your state, please reach out to our team for support.
Pregnancy after HIE is not only a medical journey—it is an emotional, relational, and deeply personal one. Whether or not you choose to grow your family, your feelings are valid. You deserve support, understanding, and the space to move forward in the way that feels right for you.
You are not alone.
Thank you to Sarah and Suzi for generously sharing your lived experiences and insights in this Peer Perspective panel. Your voices help bring connection, understanding, and hope to families navigating pregnancy after HIE.
To watch the full Peer Perspective Panel or to read our key takeaways at a glance, click the buttons below!
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