Father & Grandfather running in memory of daughter Amber
Amber was born 15 weeks premature on 30 October 2013, and sadly passed away only five months old. To show their appreciation, both Father and Grandfather have donned their running shoes and are busy training for the Great South Run in memory of Amber.
Dad, Brian Underwood, says: “When Amber was born she weighed 1.16kg, and her belly looked bigger than it should compared to the other extremely premature babies. This was due to a condition called Beckwith-Wiedemann syndrome which is an overgrowth of many part of the body.”
“These babies are larger than normal and continue to grow and gain weight at an unusual rate during childhood. Amber was found to have a larger tongue, liver, kidneys and heart. The large internal organs restricted the growth and function of her lungs."
“Amber was given a mix of nitrous oxide and oxygen to open up her lungs. She needed this treatment for nearly three days, and we were told it costs £50 per hour. We wanted to give something back to the NHS for the treatment Amber received, allowing us to have extra precious time with her.”
The family lives in Poole and Amber was born in Poole hospital before being transferred to Portsmouth. At just six weeks old Amber needed heart surgery and had to be transferred to the specialist unit at Princess Anne Hospital in Southampton because she had a PDA heart problem.
Brian continues: “Poole to Southampton was a long journey to make each day. We were thankful to stay in the family rooms at the hospital, and were one of the first families to stay in the newly renovated area. Having this area helped us to maintain some sense of normality. This room was only possible through donations to the ward, and we want to do our part to help others going through what we did. Amber even received her own Christmas stocking from the unit with a number of presents. It was the small things that made a huge difference.”
“Because of Amber’s condition, her organs were very susceptible to tumours. Every three months she needed to have scans to make sure she didn’t have any.”
Sadly about one in five infants with Beckwith-Wiedemann syndrome dies early in life from complications related to the disorder.
“Amber passed away on 31 March of chronic lung disease due to prematurity and complications with her syndrome. At the end, we were able to stay with her in the family room, and had the nurses with us to help us with Amber, and get us through it emotionally.”
“Amber was very popular and well loved by her doctors and nurses. She endured so much in a short space of time. We were then, and are now, so very proud of her. I will always remember that she gave the best kisses.”
“Both Ian and myself are really looking forward to doing this run in memory of Amber. The Great South Run is so close to the day she was born, so this will be a special challenge for the both of us.”
“The neonatal unit was like a second home to us, and we got really close to the staff on the unit when we were in hospital. They helped us have five amazing months with Amber, and we wanted to give something back to them.”
“Our other daughter, Sadie who has just turned three, was also made to feel at home too on the unit. The nursing staff loved it one day when she turned up in a nurses uniform herself. I think she now wants to be a nurse herself!
To donate to the neonatal unit, please go to Brian’s fundraising page: www.virginmoneygiving.com/BrianUnderwood