Dunedin newborn faces urgent surgery in United States for fused skull

Dunedin couple Benjamin Duran-Vinet and Karla Araya-Castro with son Maximo Duran-Araya, 5, and newborn daughter Amelia Duran-Araya. Photo / Stephen Jaquiery

A Dunedin family are in a race against the clock to get urgent surgery for their newborn baby in the United States.

Amelia Duran-Araya is not yet 3 weeks old, but as she grows her prematurely fused skull will threaten her brain development unless she can be treated soon.

Surgery is scheduled in Texas next month, but her Chilean parents still need to overcome a bureaucratic tangle to obtain a passport to get her there in time.

Mother Karla Araya-Castro said the situation was extremely stressful.

Amelia had been diagnosed with craniosynostosis, a genetic condition that had caused her sagittal suture to fuse too early.

This meant her brain did not have room to grow normally, a situation that could cause neural damage.

“At the beginning, we were really sad — I was holding her and I was looking at her and crying because you feel like like ‘why?’,” Araya-Castro said.

“Then we were in action mode — okay, what do we need to do when we were trying to focus on a solution instead of feeling sad?”

Dunedin couple Benjamin Duran-Vinet and Karla Araya-Castro with son Maximo Duran-Araya, 5, and newborn daughter Amelia Duran-Araya. Photo / Stephen Jaquiery

Civil unrest at the end of the Pinochet regime in Chile meant Araya-Castro was born in an understaffed maternity clinic, and has cerebral palsy caused by oxygen deprivation at birth.

“I already have neural damage from my birth, so I think that’s another component.

“I don’t want to repeat this story just for lack of action with my daughter.”

A baby’s brain grew at a rate of about about 2cm a month, so action was needed urgently, she said.

“It’s keeping you from sleeping sometimes because we know that every day that is passing, it’s a day that she needs more room ... to grow.”

Options for treatment were available in New Zealand.

However, they were not performed as early, and were much more invasive, involving removing and reassembling parts of the skull.

Post-surgery care was also a concern.

The endoscopic surgery available in Texas was minimally invasive, and would not require a follow-up operation — but it had a time limit.

Surgery was now booked in El Paso for January 11, although they were unsure whether they would make it in time due to the difficulty of obtaining Amelia’s passport.

A back-up date for surgery had also been set for January 23.

Although born in the country, Amelia cannot get a New Zealand passport as neither of her parents — both academics at the University of Otago — is a resident.

They needed two passports to be issued as soon as possible, despite the disruption of the Christmas holiday period.

A regular Chilean passport would take months to obtain from New Zealand.

The only solution was first to get an emergency Chilean passport allowing Amelia to enter that country.

Once there the family hoped it would take only a few days to be granted a proper Chilean passport in order to enter the United States.

The family have a GiveSendGo page and are hoping to raise $65,000.

This would cover most expenses, including travel, surgery and medical expenses, and the cost of post-operation helmet therapy.

Amelia’s father, Benjamin Duran-Vinet, said the chances of the condition occurring were about one in 2000, and it was an emergency beyond what they could have imagined.

“It’s a bill that you are never prepared for.”

As a parent the feeling of not knowing what would happen next was the worst part.

The impact of the condition became apparent over time, as children missed developmental milestones.

Some babies had early intervention yet still had significant neural damage, while others were fine without any intervention.

“For us, it’s too much of a risk to take, so that’s why we’re looking for a better solution for her.”

The couple were grateful to the University of Otago community and all those who had given them love and support recently.