Parenting Through Grief: A NICU Family’s Journey Through Loss, Love, and Healing

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Introduction

Welcome to the Empowering NICU Parents’ Podcast!

Our podcast is dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU.

I continued my powerful conversion with Jodie, a mother who faced unimaginable heartbreak while navigating the NICU during the early days of the COVID-19 pandemic.

In our previous episode, Jodie spoke candidly about the helplessness of navigating the NICU amongst the strict COVID visitation restrictions while her twin boys Adam and Henry, were in 2 different NICUs—how those policies stripped her of her rights as a mother, especially in Henry’s final moments. Her story is a heartbreaking reminder of how hospital policies, even when well-intended, can have devastating consequences for families.

In this episode, Jodie shares how she found the strength to keep moving forward. She opens up about the immense weight of grieving while parenting their surviving twin, Adam, and the struggle to find balance in the aftermath of loss. She speaks candidly about the healing power of therapy and how it helped her process the trauma while navigating the complex emotions of love and grief.

Jodie also reflects on her journey to becoming a bereavement befriender—how she transformed her pain into purpose by offering support to other parents who have faced similar heartbreak. She shares how an unexpected pregnancy with her daughter, Rosie, reshaped her perspective on life, love, and healing, bringing new meaning to her path forward.

Her story is one of resilience, advocacy, and the unbreakable bond between a mother and her children. Whether you are a NICU parent, a healthcare professional, or someone seeking to better understand the complexities of loss and survival, Jodie’s journey offers insight, validation, and hope.

Join us as we continue this deeply moving conversation and hear Jodie’s raw and powerful reflection on love, loss, and the relentless strength it takes to rebuild after heartbreak. Her journey is a testament to a mother’s unwavering love, the resilience found in the face of unimaginable grief, and the hope that emerges even in the darkest moments.

Keep reading for Jodie’s full story.

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Episode 66

How I Learned About Jodie’s Story

I first came across Jodie’s experience while a colleague and I were researching the impact of COVID-19 hospital restrictions on NICU families. As I read through the quotes from  parents who had been forced to make impossible choices, Jodie’s words stopped me in my tracks. Her gut-wrenching words immediately brought tears to my eyes. 

Jodie’s quote became one of the voices I could not forget. Her words were among those we shared at conferences when advocating for change, and on this most recent episode, I had the privilege of speaking with her as she shared her story in her own voice.

Recap of Episode 65

Jodie and Steve Marks’ journey through the NICU was one of love, heartbreak, and impossible choices. When their twin boys, Henry and Adam, were born in March 2020, they never could have imagined how quickly their world would unravel.

As COVID-19 restrictions tightened, their family was torn apart—trapped by policies that prioritized rules over the primal need for parents to be with their babies. With Henry in critical condition and Adam stable in another hospital, Jodie and Steve faced the unthinkable: choosing which child to stay with.

Through Jodie’s raw and emotional storytelling, we’ve heard the pain of separation, the weight of forced decisions, and the lasting trauma of losing Henry. This episode wasn’t just about their story—it was a call for change.

But their journey didn’t end there. In the next episode, Jodie shares how she and Steve navigated life after loss, how Adam has thrived, and how their daughter, Rosie, became part of their story. She also opens up about the long-term impact of NICU trauma and the ways she’s using her experience to help other families today.

Continue reading for Part 2. Their story is far from over.

The Devastating Loss of Henry and the Challenges of Saying Goodbye

Jodie discusses how Henry’s passing left a void in their lives, further exacerbated by the limitations on funerals during the pandemic. Not only did they have to endure the pain of his loss, but they were also faced with the frustration and heartbreak of not being able to plan a proper service for him.

Jodie describes the sorrow of having only a small gathering to say goodbye, the isolation from loved ones, and the lingering pain that no one outside of her and her husband ever got to meet Henry alive. One of the most painful realizations was that her parents and Steve’s parents were never able to meet Henry while he was alive due to hospital restrictions. However, once he had passed, they were suddenly allowed to meet him. This paradox haunts Jodie to this day, as she believes those moments should have been shared when Henry was still fighting, not just after he was gone. The unfairness of the situation remains a source of unresolved grief. Adding to their heartbreak, COVID-19 restrictions also prevented their friends from physically comforting them. Jodie and Steve were unable to even receive a hug during their darkest moments, intensifying their feelings of isolation and helplessness.

Continuing to Navigate the NICU During COVID-19

Shortly after Henry passed away, Harrogate, the hospital where Adam was a patient, also passed more parental restrictions and only allowed one parent into the neonatal unit. 

Jodie describes the mental and physical toll of being the sole parent allowed inside the hospital, highlighting the loneliness and stress that came with trying to advocate for Adam also while grieving. She wanted and needed her husband nearby, the only other person who understood how she felt. 

The NICU separation was also deeply challenging for Jodie’s husband, Steve. While she was spending long days in the NICU with Adam, Steve was forced to stay home, grieving alone and unable to be present for his son in the hospital. The isolation was painful for him, and Jodie recognized how much he needed to be there. In a moment of kindness and solidarity, fellow NICU mothers stepped in to help—some of them willingly gave up their turn in the sleep room so that Steve could come to the NICU and support Jodie during this incredibly difficult time. These unsung heroes provided a crucial lifeline, offering compassion and understanding when they needed it most.

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Bringing Adam Home: Parenting Through Grief

As Jodie grappled with the loss of Henry, she had to simultaneously care for Adam, who remained in the NICU. After weeks in the NICU, Jodie and Steve were finally able to bring Adam home. While this should have been a joyful milestone, it was overshadowed by the devastating reality that Henry was no longer with them. The transition from hospital to home was incredibly difficult—Jodie had to step into full-time motherhood while still deep in the throes of grief. Every feeding, every sleepless night, and every milestone Adam reached was a painful reminder of Henry not being by his side.

The experience of caring for a newborn twin while grieving his lost sibling was uniquely painful—Jodie describes feeling almost envious, for lack of a better term, of parents who had lost a single child rather than one of a set of twins. Unlike those who could fully immerse themselves in their grief, she was forced to push forward, tending to Adam’s every need while coping with the weight of losing Henry. The juxtaposition of her emotions made her journey even more complicated, as she had to celebrate each milestone Adam achieved while simultaneously mourning the moments Henry would never have.

One Blessing Amongst Many Sorrows

Steve, who had been forced to grieve alone at home while Jodie remained in the NICU with Adam, was furloughed due to the pandemic. This unexpected time together became a lifeline and a blessing for their marriage and healing. They were able to grieve side by side, process their trauma as a family, and lean on one another in a way that might not have been possible if Steve had been forced to return to work immediately.

Jodie acknowledges that without that time, their marriage may not have survived the weight of their loss. The statistics about bereaved parents drifting apart haunted her, but she made a conscious choice—Henry’s passing would not be the reason they lost each other, too. She encouraged Steve to seek support, recognizing that they both needed help to navigate this new reality.

While adjusting to life with Adam at home, Jodie found herself struggling with the duality of emotions—deep sorrow for Henry’s absence yet gratitude for Adam’s survival. She was forced to keep going, caring for her newborn even when grief threatened to consume her. Through it all, she and Steve leaned on each other, determined to honor Henry’s memory while giving Adam the love and stability he deserved.

Seeking Support: Finding Strength Through Therapy and Advocacy

In the aftermath of Henry’s passing, Jodie found herself navigating not only the depths of grief but also a healthcare system that failed to provide the support she desperately needed. Initially, when she reached out for help, she was met with a dismissive response—quickly offered medication instead of the opportunity to talk to someone. She knew medication could be beneficial for some, but she needed to process her emotions, to speak, to be heard. Yet, despite being assured that resources were available, no one followed up.

Jodie was left alone in her grief, searching for the support she had expected to be readily available. But she refused to accept that this was the only path forward. Through her own persistence, she eventually found therapy, though it was not through any of the initial channels she had sought. It was an uphill battle—one that many bereaved parents face—but she fought to ensure she had access to the help she needed.

Therapy became an essential part of Jodie’s healing, allowing her to process her grief in a way that felt right for her. Over time, as she and Steve continued to navigate their loss, they also participated in a couples’ support group, where they could strengthen their bond and work through their grief together. However, even years later, unexpected waves of sorrow would hit her with full force. Four years after Henry’s passing, she once again found herself struggling. When she sought help through the healthcare system, she was told the waitlist for therapy was long. Determined not to let herself slip into darkness, she made the difficult financial decision to seek private therapy, knowing she couldn’t afford to wait.

Through her own experiences, Jodie developed a deep understanding of the importance of peer support. After years of working through her grief, she joined Footprints Charity—not as a recipient of therapy, but as a befriender, offering comfort and connection to other parents who had lost one or more multiples. She recognized how invaluable it was to talk to someone who had walked a similar path, and she wanted to provide that support to others.

An Unexpected Pregnancy and the Gift of Rosie

Six months after losing Henry, Jodie discovered she was pregnant again. The news was unexpected and, at first, overwhelming. Given the emotional toll of losing Henry, she struggled with anxiety about bringing another child into the world. However, she now believes that her daughter, Rosie, was a blessing who helped her navigate the darkest moments of her grief.

Jodie describes her experience with pregnancy after loss as deeply complex, filled with both excitement and fear. She was incredibly intentional about choosing where to give birth, eventually selecting the hospital where she had delivered Adam and Henry because it carried positive memories. She also made sure to have continuity of care, choosing a midwife she trusted, which helped ease some of her anxiety.

When Rosie was born, she was healthy and thriving—everything that Adam and Henry had not been able to experience in those early days. Jodie shares how raising Rosie alongside Adam has allowed her to honor Henry while still finding joy in motherhood.

NICU Trauma and Working Through It

Jodie also reflects on the stark contrast between the two NICUs she experienced. Leeds’ neonatal intensive care unit (NICU) was a highly clinical, high-intensity environment, where every moment was focused on life-saving measures. In contrast, Harrogate’s special care baby unit (SCBU) had a more nurturing atmosphere, with bright-colored murals and a comparatively calmer environment for babies who needed monitoring rather than critical intervention. The shift between these two settings added to Jodie’s emotional complexity—Leeds being the place of Henry’s most difficult moments and Harrogate being the place where Adam ultimately thrived. Walking back into Harrogate years later with Adam and Rosie brought bittersweet emotions.

The trauma of the NICU experience was something Jodie carried long after leaving the hospital. It took her nearly a year before she could bring herself to watch a video of Henry with his eyes open, looking so alert. Although such a beautiful video, the sounds of the NICU—the beeping monitors, the alarms—brought her right back to the morning Henry passed away. The sound of his heart rate monitor dropping and the repeated alarms still haunt her. This sensory memory made it incredibly difficult to revisit footage or even discuss certain moments without being overwhelmed by emotion.

The Lasting Impact of the NICU Experience and Advocacy for Parents

Jodie reflects on how the NICU experience has permanently changed her, both emotionally and mentally. She acknowledges that while grief does not go away, it evolves. She discusses how the past five years have been a journey of learning to live with loss while still embracing the joy of parenting.

She is a strong advocate for ensuring that parents have unrestricted access to their babies in the NICU. Looking back, she regrets not fighting harder to stay with Henry in his final days and firmly believes that no parent should ever be separated from their child due to institutional policies. She emphasizes the importance of parental presence, arguing that parents are their children’s best advocates and should never be treated as visitors.

As her family approaches the five-year anniversary of Henry’s passing, Jodie continues to ensure that his memory lives on. They commemorate Henry’s life each year, honoring his presence in their family. Adam, now nearly five, has begun asking questions about his twin, and Jodie remains committed to openly discussing Henry’s place in their lives.

Jodie’s story is one of resilience—not only in surviving the loss of a child but in refusing to let grief consume her. She took charge of her own healing, sought help when she needed it, and now dedicates herself to ensuring that others don’t have to walk this road alone. Through her advocacy and work with bereaved parents, she has turned her pain into a source of strength, using her voice to push for better support systems and to remind grieving parents that they, too, deserve care and compassion.

Follow Jodie Marks

Jodie’s story is a testament to resilience, love, and the power of community. She continues to share her journey to provide support and awareness for bereaved parents. Listeners who want to connect with her can find her on Instagram at _mumdiariesuk, where she openly shares her experiences with loss, healing, and parenting after NICU trauma.

https://www.instagram.com/_mumdiariesuk

Closing

I want to extend my heartfelt gratitude to Jodie. Thank you for your honesty, vulnerability, and courage in sharing your story and shedding light on the challenges your family faced.

Our deepest condolences to you and your family for the loss of sweet Henry and everything your family endured. The weight of the decisions you faced—and how your hand was forced to make unthinkable choices—is something no parent should ever have to experience. Your strength in reliving these painful moments so others may feel seen and understood, and to make an impact and be a force of change, is truly remarkable.

Thank you for your unwavering dedication to ensuring that no other parent feels as helpless as you did. Your voice is powerful, your advocacy is making a difference, and your willingness to turn pain into purpose is nothing short of inspiring. Your story will undoubtedly provide comfort, validation, and hope to so many who need it.

To our listeners – if Jodie’s story resonated with you, I encourage you to share this episode with anyone who might find solace in her words. And remember, no matter where you are in your journey, you are not alone.

Also, if you were shaken by this conversation, you felt the passion stir inside you, and you have the desire to help push for change so parents are never forcibly separated from their hospitalized children in the future, we invite you to reach out to us. Together, we can all make an impact.

We are stronger together, and by raising our voices, sharing our stories, and advocating for change, we can build a future where no parent has to endure this kind of heartbreak alone.

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Remember, once empowered with knowledge, you have the ability to change the course.