Brisbane couple Charlotte and Glen Cullen welcomed their son, Jeremiah, into the world on May 16th 2011 at just 28 weeks and 5 days gestation (more than 8 weeks premature). Jeremiah has just turned 3 and is a happy little boy, despite still having respiratory problems, chronic lung disease and asthma and experiencing delayed speech he is healthy in all other areas.
“Jeremiah was the perfect prem. Born at 28 weeks, he came home after 8 weeks in NICU with minimal setbacks. Ventilated for 2 days, 2 weeks on CPAP, then room air. He needed TPN for 2 weeks as he couldn’t tolerate feeds, but after that he just kept hitting milestones.”
When Charlotte fell pregnant with the couple’s 4th child, they feared another preterm delivery. This time they made it to 33 weeks before baby Alecia was born on January 9th 2013.
“After having a 28 weeker we thought a 33 weeker would be a breeze. But we were very wrong.”
Whilst in the NICU, Alecia contracted viral meningitis. The virus led to encephalitis – a rare inflammation that completely destroyed her brain. Her parents were told they would never take their little girl home, but Alecia proved them all wrong and after 11 weeks in NICU she left the hospital with her parents and her older brothers and sister. Over the coming months, this little treasure battled many conditions including seizure disorder, brain bleeds, diabetes, temperature instability, hearing and vision impairment, and oxygen dependence.
“Unfortunately, in August last year Alecia lost her fight after an infection and she passed away. She was 7.5 months old.”
When Charlotte was in hospital with both Jeremiah and Alecia she received very little information about what to expect and where to access support. Thankfully through Life’s Little Treasures, the family was able to connect with other parents who had been through the experience and come out the other side.
“Talking to other mums, knowing that even though it’s a very long road there is light at the end of the tunnel was a great comfort.”
Having seen the resources provided by Life’s Little Treasures to families in need including the Hospital Resource Folders (“A Guiding Hand”) – over 1,000 of which are now distributed each month in over 70 hospitals around the country – and our smartphone apps (“NICU Words” and “Premature Baby Journal”) The Cullen’s know that the products and services they wished they had access to are now available.
“I love the hospital folder that Life’s Little Treasures gives out and I wish I had been given one. I also think the smartphone app is brilliant – to be able to document every tiny little step and milestone, as well as the setbacks.”
Charlotte, Glen, Maxine, Gabriel and Jeremiah want to share their story so that it helps others, just as they found and continue to take solace in the stories of others. To help families like the Cullen’s make a donation today.