In a private Facebook group a mum has asked other parents for advice after her doctor advised her the best thing for her baby was to terminate the pregnancy.
*For the privacy of the family I will not include names or a link to the group.
A mum from the US has asked other parents of heart kids what she should do after her doctor recommended she terminate her pregnancy.
She wrote, “My Doctor advised us to terminate my pregnancy as our child has L-TGA and a hole in the heart. Can anyone tell me about the quality of life after being treated for L-TGA?”
Dad added in comments, “The stupid doctor is telling us to forget about this child. ‘We will give you a better child next time.’ What rubbish! I don’t know what’s wrong with this doctor.”
Being a Heartkid mum myself this post has totally shocked me, as it has many other mums and dads.
The mum has received hundreds of replies (including from myself) advising her to not listen to that doctor and to seek further opinion elsewhere ASAP.
One mum wrote, “My heart absolutely hurts a doctor guided you in this way. Look at the a-mazing quality of life our cc-tga’er has! He is 18 months old and while it no doubt has been the hardest thing we’ve had to face, he and his special heart and story are the absolute gift from heaven. These kiddos often go on to lead pretty “normal” lives!”
Another shared, “Wow! I have a hole in my heart, TGA, VSD and Ebsteins Anomally! I have 5 children and have had a great life!”
Another commented, “Omg that’s absolutely disgusting, you need a new doctor!!!
“Most children born with a CHD have as much chance at a normal life as heart healthy. I’m 38 TGA mustard procedure. Have had two healthy pregnancies, a pacemaker, baffle repair, ablation & two TIA’S. I run about after my family & unless I disclose my condition you wouldn’t actually know. Your doctor is an absolute joke & needs to be struck off. This has really upset me, said another”
“HEART WARRIORS are Warriors… I’d need a second opinion .. we were undiagnosed but I would have left it to God.”
“Please get a second opinion. Please. They think they are doing you a “service” so you don’t have to “deal” with a sick baby but they don’t know squat. This just makes me sad.”
“This day! That’s upsetting.”
“Please don’t listen to that doctor and seek a second opinion. With today’s technology your baby should thrive and as long as he/she is followed regularly by a congenital heart cardiologist should thrive in adulthood as well.”
“Run! Run away from that doctor! Don’t go back!”
“Don’t listen!!! We were told our son had no chance of living when he was 3 weeks old. He’s almost 3 and you’d never know!!!!!”
“I can’t believe what I’m reading quite honestly. Doctor in question shouldn’t be permitted to practice… imagine how many terminations of children with compatible-with-life conditions they’re responsible for.. ”
It breaks my heart to think so many other families may be told this same diagnosis and advised to terminate.
We had no idea our son had a heart condition until after he was born. We were advised had we have found out during the pregnancy we would have been given the choice to terminate.
I worry that out of fear and the unknown many families may choose that option not knowing the doctor really has no clue. Quite often these children grow up to live an awesome life!
Check out my son below who is now an energetic 13 year old that never stops. He is a keen footy player and loves snorkelling and fishing.
We need to raise more awareness to prevent this happening to other families. The more families and doctor’s are aware the better the outcome for our children.
Childhood heart disease is the biggest killer of Australian kids under one.
•Every day in Australia eight babies are born with a heart defect. That’s almost 3,000 each year.
•Every week, four precious lives are lost.
•There is no known cure or prevention. Once a Heartkid, always a Heartkid.
•It’s estimated that 32,000 children (under 18 years of age) are currently living with CHD in Australia.
•Some children acquire heart conditions during childhood, e.g. cardiomyopathy, Kawasaki disease (- 200 p.a *) or as a result of rheumatic fever.
•A disproportionate number of indigenous children suffer from acquired heart disease – often as a result of rheumatic fever, which is prevalent in many communities.
•Up to 20% of heart defects are gene-linked abnormalities.
•They have nothing to do with diet. These children have congenital heart disease – not coronary, which is what most adult heart patients have.
•Approx half of the children diagnosed with heart disease require surgery to correct the defect, Australia has one of the highest rates of rheumatic fever in the world. This is rife in our indigenous communities and causes major damage to the heart valves.
•For the first time in our history there are more people over the age of 16 with CHD than younger. This is due to medical advances.
Have you ever experienced anything similar?
Share your comments below.
If you or your family need more advice and support please click here
For more information about CHD go to https://www.heartkids.org.au/
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