Thank you for contacting us. We love to hear your views, opinions and suggestions and experiences caring or raising or living with children born with a congenital heart defects.
You may contact Amelia's parent and the producer of her YouTube videos using the form below.
This website was created by Amelia's mother and she thinks the information on this website will help new parents raising a baby born with congenital heart defects. You are not alone out there.
Message from Amelia's mother:
When I first heard a clinic doctor said Amelia has a heart murmur. I didn't even understand the word "murmur". The doctor said she has hole in her heart and would refer her to a local hospital. They will try to put us in touch with other family having a baby with similar heart condition as soon as possible. They found no family. I searched the internet, I found no information about a baby born with Tetralogy of Fallot. This was 12 years ago. I must say when you are in an "unknown" zone, its pretty scary.
Then, a Paediatrics doctor from the hospital confirmed the type of heart condition Amelia has is called Tetralogy of Fallot and briefed on what to expect. I remember, at first, I was calm listening to the doctor, when he explained the heart surgery procedure and her blue baby symptom. My eyes turned into waterfall, I just could not hold it together knowing my baby was going under the surgeon's knife. I was sobbing big time because I was scared my baby would die from her heart condition.
Six month later, we met couple of parents at Great Ormond Street Hospital waiting area on the day of Amelia's first open heart surgery. They were all waiting for their babies to come out of the operating theatre. They were all having open heart surgery with different types of congenital heart defects. I learned that I was not alone and Its help.
While waiting for Amelia, I saw a notice board, pictures of a girl wearing Teakwando uniform with black belt and next to that picture was her on a life support machine. I was very happy I see HOPE and Amelia would live and I feel better emotionally. I said to myself, If this information is available online that would be great for other new parents too. That's one of the reasons this website was created and maintained till today.
Parents we became friend with while Amelia's was in intensive care, their babies had gone to heaven. I remember, one morning, a mother called me at 5am, I missed her call then I called back, she told me her baby boy has passed. I didn't know what to say and I was shocked and sad, her baby's recovery was well and they were talking about he would be discharged from hospital soon. It was just last week.
A month before, a baby girl we known has passed too. Before this, another baby boy we known passed away soon after his surgery. It seems one baby died after another. Automatic silly thoughts pop up in my head, I was scared Amelia would go to heaven too.
I was ready to go to work that day but my mind was all over the shop. I went to the hospital to see my friend and her baby boy. At the hospital, my friend put her baby boy in my arms, I cuddled him for the last time, he looked like he was sleeping peacefully but his body was cold with blue skin and lip. That was the first time I cuddled a breathless human body in my arms. I whispered to him, Goodbye "his name", the Father in heaven will look after you from now on.
His heart condition was slightly more complex than Amelia. I went to his funeral.
We have no contact after the funeral. It was kind of understood situation because it would be hard for his mother to keep contact, if we meet she would see Amelia still alive and her baby boy is not there, it would be heart broken for her.
We bumped into each other at the GOSH hospital about 2 years after that, she was pregnant with her healthy baby girl and happy. I am very happy for her and she shared how she got over with the lost of her baby boy. It was a very tough period for her.
I had similar feeling when Amelia was living in another country and had no contact with me. I didn't know of this "uneasy tough emotion" until I saw a friend's kids. I saw them watching TV, my tears start dripping down my face uncontrollably, I waited for a bit and got myself together before I go to say hello.
I did not know seeing other kids would remind me of Amelia and trigger my emotion. I avoid seeing friends with kids for a bit until I was ready and know that I was able handle my emotion. I somehow make myself a super strong person because I have to and I want to for my daughter and myself. Amelia came back to live with me after 1 year.
I like to write, take pictures and captured beautiful moments, so I thought to share this information online to help other parents, carers, people come in contact with children born with congenital heart defects because I believe the truth helps people to understand what to expect.
For us, parents that raising a child with congenital heart defects, be prepared for any situations, and be self-strong especially those lone parents. Its okay to cry sometime and be strong for yourself because your children look up to you as a role model in their life.
Forgive people may not understand your feeling during your tough times dealing with your heart child.
Raise your child the way you know what is best for him/her, If advice given to you do not make sense or do not help you/your child then put it behind you. We live and we learn.
Best of luck,