Palliative Care at CHEO and Roger Neilson House

Palliative Care at CHEO and Roger Neilson House



in September one year ago and Marie and Tom Warren celebrated becoming parents and then were thrown into a parent's worst nightmare when it became apparent baby Charlotte was not going to survive the staff at Roger Nielsen house helped her family make the very most of a brief but beautiful life the seizures began shortly after birth followed by the worst possible news on her third day they did an MRI and from the MRI they discovered that she had no functioning brain just a tiny little piece of her brain stem was still functioning and they didn't think that it was enough even for her to know to breathe brokenhearted and Marie and Tommy Warren prepared to let their newborn daughter go so we took her breathing tube out and we had family pictures taken and she kept breathing and we had about an hour in the garden and the nurse and the doctor checked her heart rate and they said it was slowing and that her breathing was slowing and it was really important to me that she passed away on my chest back at the NICU Charlotte opened her eyes even started to hiccup baby Charlotte wasn't ready to go not yet so we came to Roger Nielsen house for what was expected to be maybe a few hours or a day and and we stayed at Roger Nelson house with her for 37 days days her parents came to call Charlotte time Behav we wanted to have as many firsts as we could and we wanted to live every moment to the fullest that time and Marie says wasn't about dying it was about living Charlotte's time was going to be short but the focus from the very beginning was to build tangible pieces of memory mommy-and-me Yoga snuggles reading books marking the holidays at one month Charlotte met 60 friends and family a milestone no medical professional thought she'd make despite medical opinion and science in fact ultimately children like Charlotte are in the driver's seat but there were also constant reminders that Charlotte was medically fragile when her last day did arrive a mom knew I got up and I took her to the nurse's station first thing in the morning and told them like today today's the day on October 28th 2017 at 44 days old Charlotte Warren died in the arms of her family my husband and I just snuggled in the bed until until she passed away Roger Nielsen house was her only home I love to come here as much as I can I've been here three times this week the bereavement groups now include one called pregnancy after loss where anne-marie can share worries and concerns and cautiously let joy back in it's very much a rollercoaster of emotions yeah we're feeling like everything isn't going to be okay until he's here and in our arms your continued support makes a difference in the lives of the children at geo please visit geo foundation.com and donate today

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