Patient Stories - Zebulan

“No one asked me how I was feeling or coping and why would they? All the questions were directed to my wife and rightly so. That said, it’s easy to feel shut out like your voice doesn’t matter – but with Keech, they’ve reminded me that I’m just as important on this journey.”

I’m Michael, dad to my two-year-old son, Zebulan. I’d always pictured for myself being a stay-at-home dad, unconventional I know, but when Covid hit I was given the chance to make it my reality. I became the primary caregiver for our two little ones, and it just felt right. Soon after, my wife Jordan and I found out we were expecting our third bundle of joy, and we were over the moon. Embarking on the journey of fatherhood again felt like a blessing, like second nature at this point.

Receiving the diagnosis

After a perfectly normal 12-week scan, we eagerly anticipated our next routine scan where we would find out our baby’s gender. Because of Covid I was waiting outside until I was asked to suddenly come in. I knew instantly something was wrong. The sonographer said our baby boy had an extra vessel in his heart. We didn’t know what that actually meant, and I remember feeling
confused and scared, for me, my wife, and our unborn baby.

Soon after, we were sent to University College London Hospital for another scan and at this point the doctors explained everything to us. The more we were told, the more I struggled to comprehend what it meant for my son and our family. Our unborn baby was diagnosed with TAPVD, which stands for Total Anomalous Pulmonary Venous Drainage. We were told there was a high chance of him not surviving after he was born. While most parents would be preparing for their child’s birth, we were putting plans in place for a funeral. Preparing ourselves for the worst whilst hoping for the best. The whole time I felt the pull between the support I know my wife needed and time my children needed at home. I didn’t have time to think about my own feelings.

A difficult birth

Zebulan was born by c-section and what followed was a whirlwind of emotions. The sterile smell of the hospital, the beeping of machines, and the flurry of medical staff was all a blur. The moment Zebby was delivered, the doctors whisked him away into a separate room. I felt a pang of longing as I watched them take him away. We couldn’t pick him up or hold him as he was quickly moved to another hospital for the vital care he needed.

How could I be in two places at one time? I was torn between my wife’s recovery from a c-section in one hospital and my little Zebby, who was now at another hospital .across the city. It felt like I was being pulled in two different directions, each one demanding my full attention. I didn’t even get the chance to take a breath.

What followed were more challenges for our baby boy from heart surgery to brain surgery. In just 10 weeks Zebby had been through countless tests, procedures, and surgeries. He didn’t know life outside the hospital walls. It was chaos and looking back I don’t know how I managed to stretch myself in so many ways for everyone that needed me. As a husband and a father that’s what we ‘have’ to do right?

A beacon of hope

The pressure of our new ‘life’, hospital visits, and caring for my family was overwhelming. The emotional toll was immense. I felt like I was drowning, unable to keep up with the demands of everyday.

Amidst the chaos and despair, I found a beacon of hope when we were referred to Keech Hospice Care. Initially, the word ‘hospice’ filled me with dread, but I soon discovered that Keech was not just a place for the end. It’s a sanctuary, a place where we can relax as a family and feel comfortable with our surroundings.

Finding Keech

Zebby is now two and has fully immersed himself in Keech. We regularly attend tots and toys, have long daycare sessions and even overnight stays. I find it hard giving him that freedom because we have such a tight-knit bond and I want to be there with him always – but I know he is safe at Keech.

I found solace in meeting people in similar situations, who understand my experience without needing an explanation. The team at Keech are more than just specialists – they’re extended family, who understand our needs. They have supported me, my other two children and my wife really understand how were feeling, working through our feelings by giving us a safe space to talk and allowing us to have time as a family. That is so important, we’re making
memories at Keech.

Before I came to the hospice, I was never asked how I was feeling or if I was
coping, instead all the questions were rightly directed to my wife. But Dads are important too, aren’t we?

In my experience, it’s easy to feel shut out as a dad, like your voice doesn’t matter – but Keech has reminded me that I’m just as important on this journey and their support is always there whenever I need it. Keech have played such a pivotal role in supporting me and my family through this challenging time, I really feel the specialist care, advise and support has made my life as Zebulan’s dad just that bit easier.

Did you know, £30 could pay for a session in our interactive sensory room with a play specialist, helping a child with an incurable illness explore the world around them.

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