Hope for Baby Ophélie

Our baby girl has had a tough life. It all started when Ophélie started having seizures when she was 5 weeks old. An MRI showed abnormal brain development. Soon after, they discovered her liver was failing, and we were sent to the IWK in Halifax for a diagnosis. They discovered the bile ducts in her liver were blocked, and they fixed it with what’s called a Kasai procedure, where they use pieces of her intestines to mimic the liver’s bile ducts. Fortunately, the procedure was successful, but she’s been getting recurring infections since December 1st. Ophélie, her father and I have been for the most part living with her at the hospital for the last 3 months. We have made back and forth ambulance trips to and from the IWK in the last 3 months, and the last suggestion was an 8 week course of IV antibiotics. That course of antibiotics ended on Saturday, March 17th,  and by morning on Sunday, March 18th, she was already presenting with a fever. On Monday, March 19th, she had a seizure. She’s since had swabs done, blood work done and they started the antibiotics again, but they’re running out of options. Antibiotics won’t always work, so the next step is SickKids in Toronto. We have not been satisfied with how the IWK handles her complicated case, and her situation is getting serious. The infection is persistent, and a big concern is that her head has not grown in months, and she’s been stuck at a 1-2 month-old’s developmental level. At 7 and a half months old, she does not laugh, she does not track objects, she does not reach, she does not hold objects or put them to her mouth, she does not roll over, she does not sit, she does not crawl. The hard reality is, a child with such profound brain abnormalities don’t have a typical life expectancy, but we are not ready to let her go, we have hope that Toronto might have a different approach. We did not want to ask for money, but at this point in her journey, we’re running out of options! We’ve had a lot of help from our families over the months, and we are so grateful! Anything is appreciated! Please help  us hold on to our baby girl for as long as possible!