Cleft NZ lights a way out of the dark

When Danielle Eramiha discovered her daughter Izabella would be born with a cleft lip she felt "completely in the dark".

Ms Eramiha was 23 weeks pregnantwhen she was told her baby would be born with a bilateral cleft lip and palate.

A cleft lip or palate occurs during early pregnancy when part of the face does not join together properly while it is developing. Cases vary in severity.

Izabella's bilateral cleft lip and palate meant that her upper lip was split in two places which extended all the way into her throat.

"I jumped on the internet to see what it was and the first images I saw were the really worst case scenarios," the Papakura mother says.

"All I could think of was that Izabella was going to come out looking like those pictures and it was kind of frightening."

Thankfully specialists referred her to Cleft New Zealand which provided her with education and support, Ms Eramiha says.

The non-profit organisation, formerly known as Cleft Lip and Palate Support Group, helps around 400 families throughout the county. The organisation provides support and education to its families by hosting regular events, monthly coffee groups and websites on the internet.

Ms Eramiha attends a monthly coffee group and it’s been invaluable to her, she says.

"We meet up and talk about our day-to-day experiences and just share tips and the like in a safe and friendly environment.

"Knowing there are others out there going through the same thing really does help. And also the organisation is always just a phone call away whenever I need them, which has just been fantastic."

Now 18 months old, Izabella has had two lots of surgery to correct her cleft lip and palate.

The first she received when she was six months old to correct her lip, then another at 12 months to fix her palate. The surgeons bring lip and palate together to make them look as normal as possible, Ms Eramiha says.

"Izabella looks like a normal little girl but in the future her speech will be affected and she will need speech therapy to learn how to make the basic sounds. Her top teeth are affected as well and she will need an operation to correct them when she’s a little bit older."

Ms Eramiha hopes other families in the community who are in the same position as herself will contact Cleft NZ organisation.

Just knowing there are others who have gone through it can make all the difference, she says.

"I think they should definitely contact the organisation and especially if they don’t know anything about it.

"Families will always have questions and I believe Cleft NZ has most of the answers," she says.