Sweet Baby Olivia

Olivia and her twin brother, Liam, were born on January 29, 2017, at 23 weeks gestation, which is 4 months premature. Olivia was 1 pound 1 ounce and Liam was 1 pound 5 ounces. They both needed mechanical assistance just to breath. Since then, the challenges have been overwhelming and in some cases insurmountable. Sadly, Liam died after 3 weeks but Olivia has continued to fight with incredible tenacity and spirit.


She has had heart surgery, a procedure on her eyes and two surgeries to place a feeding tube through her abdomen - the first one into her stomach and the second one directly into her small intestine. Additionally she has had an astounding number of other procedures, x-rays, scans and scopes. She has given blood so many times that many of her tiny veins have collapsed and can no longer be used and her little body is covered in scars. After spending the first 7 months of her life in hospital she finally came home but has spent half of the next 5 months back in hospital, including on her 1st birthday.

Now at one year and a few days, she is a beautiful, chubby baby but she still has many issues. Her lungs are not fully developed and therefore she suffers from Bronchopulmonary Dysplasia (BPD). She needs oxygen at night, and she is still fed through a tube. Olivia suffers from reflux and is unable to clear fluids that pool at the back of her throat. Many times she has terrified us by choking and aspirating before turning blue and stopping breathing. Twice it has resulted in 911 calls.

For this reason, Olivia needs around the clock care. Quite literally she cannot be left alone for a second. She needs someone awake all night to watch over her in the event of an apnea spell. She has to be taken with you if you want to shower, go to the bathroom or leave the room for even 5 seconds. Also, she is fed by pump for 15 hours every day. As a result of her medical conditions and care, Olivia has not led a normal life and is significantly behind in her development.

Olivia’s prognosis is still largely unknown. Hopefully with time she will catch up developmentally to other children her age, but nobody knows how long that might take. Certainly she is bright eyed and curious and she is starting to hit certain milestones that her parents feared would never come. She has been resilient, patient and extremely good natured. If ever there was a tough little kid, it is Olivia.

Her family are extremely grateful for the care Olivia has received in the NICU at the Ottawa General Hospital and at the Children's Hospital of Eastern Ontario. They are so glad they live in Canada and that the health care system has been so excellent.

However, there are many additional expenses associated with Olivia's care and her parents are drowning in bills and debt and are overwhelmed by the burden of how much it costs to care for a chronically ill child. Tim is working at a very intense and stressful job but has been lucky to be given flexibility and incredible understanding. Jamie’s full time job is Olivia’s care which in addition to the typical care of a baby includes administering her medicine, setting up and cleaning the feeding system, keeping up Olivia's physio, dozens of in home or in hospital appointments each month, and of course never losing focus or taking any naps herself. She had to give up her job and did not receive any government support throughout her maternity leave. Olivia’s parents are embarrassed and conflicted about asking for help but the reality is that they need it. Their monthly costs eat up the vast majority of Tim’s after tax salary.

For their own health and sanity and so that they can also care for their two year old son, Jacob, they have the help of some personal support workers for some of the overnight shifts which are partially funded but still cost them between $1500-$2000 each month. Olivia was in hospital in January for 20 days and there will be a $6000 bill for the costs associated with that stay because the hospital doesn't have the resources to provide Olivia with the 24-hour observation she requires.  She is too old for and has outgrown the NICU where that level of support was part of her care. Supplies such as oxygen and feeding equipment cost between $500-$750 each month. A key element to Olivia’s development is physiotherapy which they have to pay for privately to the tune of $750-$1000 every month and that is for fewer appointments than is actually suggested. After months of subsidies for the feeding pump they now have to buy their own ($600), they need special chairs and bath equipment ($1000+), and there is the constant cost of hospital parking and prepared foods.  

This is why I am starting a GoFundMe campaign in the hopes that some money can be raised to help the family with their expenses. If you wish to donate, that would be fabulous. If not, don't worry but it would be great if you could share this information with your social media friends or anyone else you can think of who would help.

With thanks.