This website is created to share experiences with families, friends and parents having children with similar heart condition as Amelia who was born with a congenital heart defect (CHD) called Tetralogy of Fallot (often abbreviated to TOF), her physical development, symptoms, on-going medicals treatments and so on.
Amelia is now 11 years old and she goes to school; play with other kids and learn new things every day. Amelia likes sports and she understands she will have to stop doing what she is doing if she feels chest pain or out of breathe or dizzy. She also developed keen interest to seek in depth knowledge in her medical treatments and equipment used in her treatments. She has her own cardiology stethoscope, she used it to listen to her own heart rhythm and she compares her heart rhythm with a normal person's heart. Amelia has irregular heartbeat, the Electrophysiology key hole surgery performed in October 2015 has brought it down to 1%.
Amelia was born in December 2005 at one of the hospitals in North London in the United Kingdom (UK). Her heart problem was not detected until she was 6 weeks old. The doctor said she has a loud systolic murmur. Since then Amelia’s heart condition was being monitored the Great Ormond Street Hospital (GOSH), the Children Hospital located in Central London, UK.
Amelia was baby number 1271 getting heart treatments from Great Ormond Street Hospital according to GOSH records.
Amelia started showing signs of bluish-purple skin from crying and feeding from three months old onwards and the frequency of the blue baby symptoms which made her vomit increases to the point she had difficulty to keep food down her stomach and She had had her first heart surgery when she was 6 months old, on 23 May 2006 at Great Ormond Street Hospital (GOSH). She was kept at GOSH after her heart surgery for two weeks.
The trickiest task to do before Amelia’s open heart surgery was that of to make sure she puts on as much weight as possible and it was very interesting to hear from other parents of different methods they used to help their babies to gain weight. Some parents gave blended solid food and other parents gave cheesy food. Amelia was unable to take solid food even in liquidised form she turned blue and vomit (like a fountain) before she could finish her food. Doctor said eating and drinking for Amelia was like running a marathon each time. She sweats a lot during feeding. Amelia then only drank formula milk every 2 hours throughout the day every day till her first open heart surgery. Amelia was able to eat solid food after her surgery.
Amelia has had her second open heart surgery in June 2009 to remove the pulmonary obstruction in her heart. She felt tired easily before her second surgery.
The information on this website is compiled by Amelia's mother and is updated frequently. We hope that this website has provided hope to parents that having a child with similar heart defects as Amelia.
We welcome parents to contact us for further information about Amelia's development.
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