Amaya’s Story

Amaya was born in 2021 at just 23 weeks and 5 days of gestation — far earlier than anyone was prepared for. Her arrival was sudden and traumatic, the kind of moment that changes your life in an instant. 

Some might say she couldn’t wait to meet us, but the truth is there are no words that can truly explain a birth so early, so fragile, and so frightening.

From her very first breath, Amaya was fighting to survive. 

She needed the highest level of neonatal care, but due to a lack of space in our local NICU (Neonatal Intensive Care Unit), she was transferred miles away from us to Medway in Kent. 

Those first two weeks were a relentless battle. She did not respond to treatments as hoped, suffered brain bleeds that led to hydrocephalus, developed sepsis, and then faced a spontaneous bowel perforation that required emergency, life-saving surgery.

Amaya was later transferred to King’s College Hospital, where she spent around seven and a half months. Life in the NICU is something no parent is ever prepared for. Days blur into nights, filled with alarms, machines, and constant anxiety. You watch other parents hold their babies for the first time, celebrate milestones, while you wait — and hope. You also witness unimaginable loss, as some babies quietly gain their wings.

During this time, Amaya had 10cm of her bowel removed and was left with a stoma, which was later reversed. She endured countless infections, repeated intubations, surgeries, and setbacks. If there was a challenge to face, Amaya faced it — over and over again. Her strength was extraordinary, even when her body was so incredibly small.

As a parent, I heard the words no one should ever hear: your child may not survive. That conversation — “the talk” — stays with you forever. What I never expected was that just as progress was being made and conversations about going home began, we would be pulled back into that same devastating reality more than once.

In January 2022, Amaya developed a chest infection and needed additional respiratory support. What initially seemed manageable quickly became life-threatening. She went into respiratory distress, and further tests were carried out, including an echocardiogram — a scan that would change our lives forever.

Amaya was diagnosed with pulmonary vein stenosis (PVS), a rare, aggressive, and often devastating condition. A cardiologist from Evelina London confirmed she had PVS alongside pulmonary hypertension. PVS is not widely known, not easily treated, and too often diagnosed when time is already running out.

When doctors say, “Don’t Google,” they truly mean it.

Over the next five months, Amaya underwent repeated procedures in an attempt to save her life. At times, we were told there was nothing more that could be done. 

We had countless conversations with medical teams and palliative care — conversations no parent should ever have to face. Yet despite everything, I refused to give up. And more importantly, Amaya refused to give up.

PVS is a condition that desperately needs awareness, research, and funding. Families are often left with little information, limited options, and impossible decisions. Too many children are lost to a diagnosis most people have never heard of.

We were once told Amaya had only the weekend to live.

Today, she is four years old.

Her life is proof of the power of advocacy, persistence, and hope. Amaya’s journey is not just a story of survival; it is also a call for greater awareness of pulmonary vein stenosis, for earlier diagnosis, better treatment options, and a future where more children get the chance that Amaya fought so hard for.

Get involved and support our latest appeal for King’s College Hospital to give babies like Amaya a chance