Short Bowel Fight For Addison

Addison's Journey.. We were just like any other happy and caring parents expecting our little bundle of joy to arrive perfectly healthy and safe. We had everything prepared, the cot, pram, car seat, everything that you could imagine in preparation for our little girl to arrive.. we weren't prepared for the life long battle our girl has ahead of her though. We had our routine 20 week scan, expecting the results to come back perfect like any other pregnancy, but this wasn't the case. We were told that our baby had a bowel obstruction and that the actual cause or condition wouldn't be determined until birth when they could examine her. My partner had to travel to Canberra hospital every fortnight for scans to check that the obstruction was not becoming life threatening for her or the baby. On September 15, 2019 my partners waters broke in her home town of Tumut and she was rushed to Canberra hospital which is a 2 and a half hour journey by road to deliver, as the baby would need a specialist team at the time of birth for assessment. On the 16th of September our little Addison entered the world and she was taken to the Neonatal Intensive Care Unit only minutes after being born to be monitored and undergo ultrasounds and xrays. They discovered through scans that her colon and bowel were not connected and also that she only had 30cm of intestine, where the average born with is 80cm-90cm. This condition is called 'Jujenal Atresia' or most commonly known as 'Short Gut'. Addison was taken in for her first surgery at just 11 hours old to try correct the problem. Due to this she is totally TPN dependant as she cannot tolerate food like a normal baby can and has remained in hospital her entire life, she is now 6 months old. We have been told by doctors that the likelihood of going home with her will not be within the first year of her life, this has been devastating news for us as all we want is to be able to take her home. We are currently staying at the Ronald McDonald house to be close to our girl and give her all the support she needs.We are working with a surgical team in Sydney to organise in the future another surgery in hopes of helping her manage this condition, we understand that Addison may be living with this for the rest of her life. Due to her medical condition my partner and i have had to pack up our lives in our town and make the move to Canberra in order to be able to take her home one-day due to the unavailability of medical resources in a small town like Tumut. Addison will require special medication and appointments that unfortunately will not come cheap, but are neccessary for her. We have been unsuccessful in obtaining a house in the rental market as it is very competitive and expensive for a family that is unable to return to full time work and we are running out of options for housing. We know that this journey has only just begun but we feel that we need to get all the support we can in order for Addison to live a relatively normal and happy life. She deserves to be happy and have the opportunities any other child has.

Donations

  • Eileen Heverin 
    • $100 
    • 1 mo
  • Kate Finneran 
    • $10 
    • 1 mo
  • Megan Maguire 
    • $30 
    • 2 mos
  • Aisling Flaherty  
    • $50 
    • 2 mos
  • Anonymous 
    • $80 
    • 2 mos
See all

Organizer

Damo Cottle 
Organizer
Canberra, AU
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