Tessa Prebble tries to blink back the tears, but a year after her beautiful daughter Eva died, they’re hard to stem.
“Eva was only here for 10 months but she was loved by everyone who met her,” says Tessa. “Despite all of Eva’s health issues, she was an incredibly happy baby who taught me how to find joy in life and to make the most of whatever happens.” Eva was born with a rare genetic disorder known as Charge syndrome, which affects one in 10,000 newborns. Symptoms can range from sensory impairments to brain damage and developmental issues.
Eva was born blind and deaf, had a hole in her heart and an enlarged cyst on her left eye. Unable to swallow, she required feeding with a tube. Tessa (32), a former journalist who now teaches media and social studies at a Wellington secondary school, says although she always wanted children, Eva was a “happy mistake”. “My former partner and I hadn’t been trying but when it happened, we were overjoyed.” That joy continued throughout her pregnancy when scans showed only a minor abnormality to one eye. But 24 hours after Eva’s birth, in April 2015, the reality of her situation started to sink in.
“I got the bad news in chunks, but it was still hard to accept. I remember a paediatrician telling me what was wrong with Eva, but I was in denial. I kept thinking, ‘He doesn’t know what he’s talking about.’” Six weeks after Eva’s birth, Tessa split up with her partner and says she briefly considered adopting out her daughter. “I’m so glad now that there wasn’t anyone willing to take on a child with her issues. If Eva had been adopted, I wouldn’t have had that special time with her.”
Instead, Eva was fostered out for a couple of months to allow Tessa to “get her head together”. “I pictured how my life was going to be – raising Eva on my own, not being able to work and surviving on benefits, and it freaked me out. I’m a pragmatic person and I needed time to go to counselling, to get some anti-depressants and to consider how I could make it work.”
At the end of eight weeks, Tessa reclaimed her daughter. “I realised how much I loved her. It didn’t matter if she couldn’t hear or see me, I was determined to give her the best life I could.”
Although Eva was frequently hospitalised, the pair moved in with friends and despite the odds, her daughter was starting to flourish. “She was learning how to roll and pull herself up. She knew my touch and would get excited about her bath. Last summer, she had her first dip in the sea and was about to get cochlear implants in both ears, which would have allowed her to hear.” But on February 25, 2015, a simple cold proved deadly for the tiny infant and, despite being given CPR, Eva was unable to be revived.
Following an incredibly difficult year, Tessa, whose cousin is Outrageous Fortune actress Antonia Prebble, is now reaching out to other parents of special needs children with her blog and podcast The One in a Million Baby. Featuring the personal stories of other parents, Tessa says it’s designed to show others they are not alone. “The blog started as a way of processing my own experiences and I was thinking about turning it into a book. But I know how powerful podcasts can be, so I asked the mothers of special needs children to tell me their stories and I was overwhelmed with their honesty and willingness to share.” So far, she’s featured the stories of families in Australia, Britain and the US. Most of the interviews are done by Skype, although Tessa is hoping to interview Kiwi parents in person. Thanks to fundraising by a group of mothers, she was able to travel to the US in January to interview one family.
“I’ve since been told that a nurse in Oregon is playing my podcast to families in similar situations.”
While Tessa is unsure if she will ever have another child, she is determined to continue with her podcasts. “It’s so helpful to be able to make that connection with someone else who’s going through a similar thing, to create a community to provide advice and support for complete strangers. I didn’t really have that and it would have been so helpful, especially when I was considering adopting Eva.
I felt like a monster for doing that, but to know others might be feeling the same is an enormous relief.” Tessa, who has several tattoos dedicated to her daughter, encourages other special needs parents to share their stories. “You’re not alone, there is help out there.”