Zach’s story

From early on, he showed amazing strength and courage to survive.

Within hours of his first breath, Zach’s parents learnt that he’d suffered a catastrophic brain bleed in utero. He was blue-lighted to a specialist hospital where he spent much of his short life.

Do you want Zach resuscitated if he can’t breathe for himself? How much do you want us to intervene if Zach is struggling? Questions that baby Zach’s mum and dad never imagined would be asked quickly became routine.

But he fought every hour of every day to live, defying the odds laid out by his many consultants.

“We always said we’d let Zach decide. If he was fighting, then we were going to fight for him, he made that decision. From early on, he showed amazing strength and courage to survive.”

When they thought of a hospice, they thought of just a place to go to die.

After 10 long and challenging weeks, Zach came home. His mum and dad knew it wasn’t going to be easy, but they were determined to make the most of every moment together as a family.

During their first month at home they enjoyed their first family trip, a long weekend in Tenby, followed by a campervan holiday in Dorset!

“We were quite naive about how poorly Zach actually was. That was better in a way because, if we had known, we would have been too scared to take him.”

Long hospital stays were still routine for Zach, but his mum and dad made as many precious memories as they could during the better days.

So, when they first met Emma from Tŷ Hafan, they were hesitant. When they thought of a hospice, they thought of just a place to go to die.

Then the world changed.

“We learnt that Tŷ Hafan isn’t just a hospice for sick children and palliative care but a place for respite and support for the whole family, and where you can escape from the hospital environment.”

After some very difficult conversations, they decided they needed all the support they could get to make sure Zach lived his best life, however short that may be.

“Zach faced a new battle every day, but Tŷ Hafan helped us make the most of the good days and enjoy time as a family knowing that we always had support around us.”

Then the world changed.

Baby Zach was just 10 months old when the pandemic meant that only one parent was allowed on the hospital ward at a time.

They had family time when they needed it most.

“Support from grandparents, family and friends was limited to visits in canteens and car parks. During the long days and nights sat at Zach’s bedside, without us being allowed to stay together, we often felt helpless and alone watching him struggle.”

Tŷ Hafan stayed open during the pandemic, giving Zach and his mum and dad a safe environment with a sense of normality. They had family time when they needed it most.

On his first birthday, Zach was at home, and his mum and dad celebrated the incredible milestone with a party with friends and family on Zoom.

But, once again, his time at home was cut short and Zach was back in hospital.

“After some extremely scary days and nights trying to manage his pain and symptoms, our brave little soldier bounced back once more and made us all smile again. On the good days, we went for walks in Heath Park. He could be a little boy enjoying the fresh air and sunshine.”

He was given space to relax.

Not long after his first birthday, Zach’s mum and dad began to have conversations about returning to Tŷ Hafan. This time, for end-of-life care.

They knew they didn’t want their little boy to pass away at home or in hospital. Home would have been too difficult, and hospital was too clinical.

“We were all at breaking point and these conversations were the hardest we have ever experienced.”

Tŷ Hafan was quiet and peaceful, so that’s where Zach spent his final days. He was back in a calm environment without the constant checks, tests and needles. He was given space to relax.

“We were together, just the three of us, in a perfect room overlooking the sea. Holding Zach in our arms and saying goodbye was the hardest thing we will ever do, and we’ll continue to re-live that day for the rest of our lives.”