Thank you nursecuppy, aka my mum! Question for Sarah on the topic of my baby boy, Jack's, medical condition...
As mentioned above, my son has a rare condition called Cystic Hygroma - this affects the left side of Jack's face and neck. As most first time mums-to-be, I was careful throughout my pregnancy and did all I could to make sure my baby arrived safe and sound. I loved being pregnant, it was complication free and all ultrasound scans showed a 'normal', healthy baby, growing at the correct rate.
We were so excited and couldnt wait for our little one to arrive. However, when Jack was born we were devastated to find something wasnt quite right. It was from this point the confusion began; our Midwife was fantastic but had no idea what the swelling was, the Obstetrician thought it was a blocked saliva gland, the Pediatric Nurse was clueless and the Pediatric Consultant was again unsure and told us Jack would be scanned the next day.
The next day arrived and we were told we'd actually have to go home and wait for a ultrasound scan appointment. I know you've sadly had more than your share of grief and worry in this area, so you'll be able to imagine how hard it was waiting for 6 weeks to find out for sure what was wrong with our new baby.
Jack's condition was officially labelled, but this lead to other issues. Cystic Hygroma is a largely unknown condition, meaning most medical staff I've come into contact with since having Jack, had not witnessed this condition before. They include; Health Visitors, Midwives, GPs, Doctors in NHS walk-in centres, A&E Doctors plus staff on the maternity ward.
I find myself constantly informing healthcare professionals of the condition, yet most of my knowledge is internet-research based and to be honest, a lot of the info is conflicting and in difficult to decipher, medical paper format.
We were eventually given an appointment with a Cleft Lip Surgeon (no specialist in our area). We met the Surgeon with an open mind, only to find him unprepared for our questions and reluctant to talk openly about his experience. He stressed the importance of an MRI scan - we cant know the extent of the problem or know how to proceed without it. We were told an MRI would be arranged when Jack was one year old. Jack is One on the 28th of March and we're still awaiting the appointment.
This is made all the more frustrating by the fact that a programme called Childrens Hospital was aired on ITV last week, showing an experienced surgeon based in Manchester advising parents of a child with Cystic Hygroma that an early operation (at 6 months) was the best option - hopefully stopping the cyst before it grows any further both internally and externally.
My question to you Sarah, is how do I get my baby in front of a surgeon with relevant experience, and is there any government/charity funds available to help with travel/overnight stays, should Jack need to be treated outside the area?
Many thanks!