In early May of 2023, my husband and I took our 10 week old daughter to the GP as she had had a cold for a few days. The GP believed she had bronchialitus and told us to go to A&E.
At A&E the doctors noticed some marks on our daughters chest, which several weeks earlier another GP had told us were strawberry birthmarks. The consultant we saw said as we were in the hospital they would do some blood tests to be sure and advised they would suction her to ease the cold. When they suctioned her she then stopped breathing and ended up in ICU on a ventilator and was diagnosed with Acute Myloid Leukaemia.
Our daughter then spent 7 days in ICU slowly coming off the ventilator and having her first doses of chemotherapy.
We were then moved up to Lochranza where we stayed from May until August while she underwent 2 more rounds of chemotherapy before we were transferred to Glasgow for her bone marrow transplant.
From the moment we entered A&E to the day we left Lochranza, the care and attention given to her and ourselves was absolutely outstanding. From the quick response down in A&E by all the nurses and doctors, to the amazing team in ICU who kept us going during the most difficult first week of her diagnosis, to everyone in Lochranza who looked after us for 4 months, we will never be able to thank them all enough for what they did for us.
The nurses and student nurses in Lochranza really are outstanding and every day we were on the ward, they took time to talk to us, get to know us all as a family and make sure we were all ok not just our daughter. Nothing was ever too much trouble and would always help us with any questions or problems we were having and gave us so much reassurance that our daughter really was having the best care we could ask for.
There were so many other teams who we interacted with during our time in Lochranza who all contributed to her and our time om the ward being a positive experience including the dieticians, physiotherapists, speech and language therapists, play specialist and even the volunteers for ECHC.
Everyone taught us how to live daily with the diagnosis but also how to make sure she was continuing to reach her normal baby milestones; eating solids, rolling over, sitting up.
Emily the play specialist was always on hand to sit with her if we needed to pop out, bring us any toys or play accessories that we needed and made us some beautiful keepsakes that we will treasure forever.
"The care and attention given to us was absolutely outstanding"
About: General practices in Lothian General practices in Lothian Edinburgh EH16 4SA Royal Hospital for Children and Young People (Edinburgh) / Accident & Emergency Royal Hospital for Children and Young People (Edinburgh) Accident & Emergency EH9 1LF Royal Hospital for Children and Young People (Edinburgh) / Dietetics Royal Hospital for Children and Young People (Edinburgh) Dietetics EH9 1LF Royal Hospital for Children and Young People (Edinburgh) / Lochranza Ward Royal Hospital for Children and Young People (Edinburgh) Lochranza Ward Edinburgh EH16 4TJ Royal Hospital for Children and Young People (Edinburgh) / Physiotherapy Royal Hospital for Children and Young People (Edinburgh) Physiotherapy Edinburgh EH16 4TJ Royal Hospital for Children and Young People (Edinburgh) / Play Services Royal Hospital for Children and Young People (Edinburgh) Play Services EH9 1LF Royal Hospital for Children and Young People (Edinburgh) / Speech and Language Therapy Royal Hospital for Children and Young People (Edinburgh) Speech and Language Therapy Edinburgh EH16 4TJ
Posted by Alisonvnly527 (as ),
Responses
See more responses from Margaret McEwan
Update posted by Alisonvnly527 (a parent/guardian) 4 months ago
See more responses from Laura Reilly