Claire Linsay

Australia

Hub Leader

[email protected]

My Gastroschisis journey began with my 12 week ultrasound. I was told “the organs are on the outside, sometimes they’re lazy and make their way in later…come back in 4 weeks time”. Four weeks passed, and the diagnosis was Gastroschisis. Living in Coffs Harbour, a regional town on the mid north coast of New South Wales Australia, our local hospital was not resourced to deliver Gastroschisis babies. I was due to be induced at John Hunter Hospital in Newcastle at 37 weeks gestation. I made it to 32 weeks before Archie decided it was time to enter the world. What followed was a 26 hour labour, severe weather leading to an emergency flight interstate with Archie being naturally delivered at the Mater Mothers Hospital Brisbane, Queensland at 12:10am on 12th May, 2010.

Archie’s small and large intestine and his stomach were hung using the Silo Procedure. It took ten days for the organs to make their way back inside of the body. He came off life support and I got my first cuddle after ten days… it was the happiest day of my life. A vacuum dressing and silver was then used to close the hole. Being in the NICU was an experience like no other and it has changed me in many ways. I have a deeper understanding and respect for the miracle of life. The bubbling of CPAP machines, doors constantly opening and closing, machines beeping day and night, Lactation Consultants, Doctors and Nurses, it was hard to bare, when all you want to do is take your new baby home. I’d felt robbed of so many things, an enjoyable pregnancy, holding my baby after delivery, and now breastfeeding.

It was one step forward, two steps back with Archie’s recovery. He was discharged from NICU after 3 months but after two stints in our local hospital for vomiting, we were back to Brisbane and were admitted to the Childrens’ Hospital. Total gut rest, TPN, Barium scans, a gruelling few weeks passed before Archie was diagnosed with NEC. He fought through numerous blood transfusions as his tiny body was pumped full of antibiotics, it was heartbreaking to watch. After 4 months and 6 days, my Archie bear came home. However, a blood clot in the jugular meant that he came home with an inserflon in his leg and on blood thinning daily needles which I had to administer.  This combined with the daily dressing of the Gastroschisis wound, meant that I’d gone from first time mum to nurse in what felt like a whirlwind.

I am now an accidental activist and have spent the last 8 years of my life on a mission to understand as much about Gastroschisis as I can. I am honoured to be Hub Leader for New South Wales, Australia it is a role I very much embrace. Spreading awareness, pushing for research and uniting a community through support are my goals and priorities. I have two children, Archie and Evelyn.