Hamilton mum of four Shannon cares for her beautiful youngest child Tailen, who has Cystic Fibrosis.
Her days generally stretch from 6am to 1am, and include an intensive medication regime, several physio sessions, up to 30 nappy changes, and the ever-present fear of infection.
The financial pressures are immense and she admits most days, she sits down and cries, but manages to keep going for the love of her family.
She shares her story:
My name is Shannon and I am a mother of four. My three elder children to my ex-husband are aged 10, eight and six. I have an 11 month old boy, Tailen, who has Cystic Fibrosis.
I owned my own photography and floristry business which I owner-operated over the last five or so years. I had been also working part-time at a florist in town but gave this up during the very early stages of my pregnancy, due to the complexity of illness I had.
Jaison, Tailen’s dad, is off work. He had been on ACC due to three back operations and is now awaiting another op date for his back. I survive my bills / rent with a Supported Living payment. It is extremely stressful, and most days I try to hold up happy, but it’s a kick in the teeth that I am unable to provide better for my kids. The cost of Tailen's illness so far in our life has been crazy!
Tailen was born on 15th December 2016 at 37 weeks' gestation weighing five pounds four ounces. He is mine and Jaison’s first child together. With a rough start to Tailen’s life and failures to get a good feeding structure in place, the Cystic Fibrosis diagnosis came after Tailen’s heel prick after birth. There is no history of CF on either side of Tailen’s family.
The first couple of months I was forever changing Tailen's nappy. We went through 786 newborn nappies, and found through diagnosis this was due to his condition. Now I can still have the same nappy changing situation depending how Tailen is feeling. I can easily go through 30 nappies a day.
He persistently is on Creon 10,000 capsule granules per bottle feed and has been since diagnosis. The Creon enables Tailen to digest whatever goes through the stomach, as his pancreas does not work on its own to enable him to absorb fats so he can grow. This is required with all foods with fat content and will be required for the rest of his life. The major focus to date has been to optimise feeding, as it has been very challenging. Tailen is still behind in his growth but is slowly catching up!
Tailen also has to take many other drugs which are currently all subsidised. It has been a once to twice venture to the pharmacy weekly and will continue to be this way for the rest of his life. Although it has become a routine in the last year it hasn't been an easy thing to process as parents, and family. As we live 15 minutes out of town, where we rent rurally, it can become quite an expense running in every week.
Physiotherapy is also done two to three times a day, 20 minutes at one sitting, morning, midday and evening, to start a routine so that Tailen is aware of what is expected for his lung health - which can help delay the damage and lung disease which more than likely will progress to a lung transplant journey, too. The physiotherapy will increase in length and sessions, depending the current infections at the time.
Also in our daily routine we need to use hypertonic sodium in which I draw up the hypertonic mix and nebulise Tailen twice a day. Generally it takes around 45 mins each time including drawing up and cleaning of the equipment. I like to do this around physio, if time allows around my other children, morning and night. As well Tailen is on pulmozyme daily through a nebuliser. This generally takes around 20 mins including equipment cleaning.
All Tailen’s life we have been battling with infections. He has been on oral antibiotics for most of his life, three times a day. Until recently Tailen had to go into theatre for the first time to get a line put into his chest. This meant a week in hospital and training to draw up the IVs and administer them at home for two weeks after discharge. This is all additional to the ‘what is our normal’ routine here at home for Tailen.
Dee Campbell, our nurse who is the main part of our CF team, has been an amazing support. Even though we are required to visit hospital very regularly (especially during our hard times) she has come to our home for weekly visits, to take the pressure off some finances - and easing back on carting my other children up to the hospital, as I have done on occasions.
To be honest I feel within myself that I have not had much support from family or friends now I have Tailen, and only of late have they stepped up to help with my older children. My ex-husband is having them more as he can – he lives in Whakatane so it’s a hike every fortnight - but still takes a lot of time out of being able to get out and do things like I used to with them, especially when Tailen is critically unwell.
My day tends to start at 6am and I am in bed by 1 to 2am most mornings, by the time I have caught up on my housework and other duties required in everyday life.
In October I received an allocation of 20 days of Carer Support for the year. I am not even sure how I would go about using them yet, as my support is minimum really and I struggle to ask for help.
I guess at the end of the day we all have to do this, and want what is in the best interests of those we care for, and even though most days I do sit down and cry, and expect to be an unpaid carer throughout Tailen's life, I just wish that there was better access to help where needed, better access to being able to actually survive financially and pay the bills and not sit constantly owing money borrowed to get through some weeks when life is really tough with Tailen and he needs the things he does to get through.
You can follow Tailen’s journey here
What Is Cystic Fibrosis?
Cystic Fibrosis is an inherited disorder. A baby can only be born with CF if both parents carry the affected gene. It is not caused by any previous illness suffered by one of the parents or by anything that happened during the mother’s pregnancy. It is non-contagious.
CF affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. In the lungs this can cause shortness of breath, a chronic cough and repeated chest infections. If the blockages affect the pancreas this will reduce or stop enzymes from being released to digest food, causing problems with poor weight gain and malnutrition due to malabsorption.
At present there is no cure for CF, but the gene that causes the disease has been identified and researchers are working to find ways to repair or replace it, and medications to treat CF complications.
Learn more about Cystic Fibrosis at http://cfnz.org.nz/about-cf/