In some way I kind of knew that my youngest son Tailen had cystic fibrosis. The pregnancy was horrible, my baby wasn't growing well in the womb. He wasn’t breathing when he was born and was rushed to the neo-natal unit. It was obvious something was up.
Tailen was born much smaller than my other three children and he didn’t feed properly and I was forever changing his nappy – he could easily go through 30 nappies a day.
Having worked at Waikato Hospital in the past, I kind of got a feeling for different health conditions. When Waikato Hospital called after Tailen’s heel prick test and said I needed to go to Waikato Hospital and bring a support person, I pretty much knew we were going to be told that Tailen had cystic fibrosis (CF).
Cystic fibrosis can cause severe or sometimes mild effects. Unfortunately, so far in Tailen’s case, he is at the more severe end of the condition. Since his diagnosis he’s been admitted to hospital nine times and there have been countless hospital appointments, sometimes up at hospital up to four times a week.
He’s been on a nebuliser since he was six months old (which is very young) for hypertonic saline and pulmozyme. He’s also had to have a PIC line inserted into his chest for when he needs intravenous antibiotics to combat an infection which is way too often. He has had two PIC lines within six months of each other. It’s extremely easy for anyone with cystic fibrosis to pick up bugs and viruses.
Tailen is mine and my partner Jaison’s first child together. We both have three older children each. There is no history of cystic fibrosis in either of our families and now I want to know why I wasn’t made aware that I was a carrier for the CF gene, as my genetic counsellor has told me that carriers can be identified via markers on the heel prick test which both of us would have had when we were born, but apparently it’s too expensive to look at genetic testing for all possible carriers in New Zealand. If Jaison and I had been told we were carriers we might have been able to prevent Tailen’s cystic fibrosis.
It has been an emotional rollercoaster and I don’t wish this journey on anybody. It’s not just the diagnosis, it’s the level of care involved in caring for Tailen – the physiotherapy and nebuliser treatments every day, not to mention the ongoing hospital admissions.
I had to give up my photography business and my part-time job as a florist to care for Tailen full-time but have no financial support to compensate for this. I know of carers of other illnesses such as autism who are paid to care for clients. I go well over and above what a normal parent does and I can’t put Tailen in day care because of all the bugs he could pick up so there needs to be more financial support for families like us. From a carer’s point of view I believe the carers of cystic fibrosis children should be entitled to paid-carer assistance.
I’ve received wonderful support from the CFNZ Field Worker, Gretchen – she’s lovely. She often checks in to see how things are going and she's there if I need to ask questions. CFNZ helped towards an electricity bill last year because our family were struggling, which was a relief. I am beyond grateful for the support.
Thankfully Tailen is happy in himself. He’s happy to have physio twice a day and adapted quite well to his nebuliser. He’s calm and happy even when he’s unwell. At the end of the day our baby is our baby no matter what they’ve got.
I have found some comfort in the Facebook page about Tailen’s journey that I set up in March 2017. I would rather write about our challenges than ball my eyes out about them, and express myself in a way that can possibly help the community understand about CF. It also helps let my family and friends know what’s going on with Tailen’s health.
Right now I live for the time when we can have six month period without hospital visits or antibiotics and that he can just try and be a normal child.
Long term I would love Tailen to go to school and be able to play sports – like rugby, and hopefully go to university and get a decent job.
In a way this journey has made me a better person. I’m a lot more compassionate – Tailen’s taught me so much and also made other people more compassionate too, like our other children who can see the reality of a chronic health condition for themselves.
I advise the parents of other babies with CF to reach out for help – don’t be afraid to ask questions. Keep an open mind and know that when you’re having a bad patch you will get through it. I know my family have been great even though we are not that close. It’s important to keep your immediate support small and rely on them. Having friends and family cook you a meal, do some housework or buy the groceries is like gold to me.