I have a little great grandson who was born with major congenital heart defects where everything was connected in a back to front configuration and the oxygenated blood from his lungs was flowing straight back to his heart, leaving deoxygenated blood to continue to circulate his body. He was born by planned C-section with a team at the Groby road Leicester Cardiac unit on standby to take him straight to theatre for surgery to correct these defects which lasted for 9hours. He then spent a week in their paediatric intensive care unit before being transferred to a ward where he remained and received further treatment via medication and physiotherapy until he was 6 weeks old, when he was finally allowed home. He’s now a fairly healthy one year old who’s developing like any other baby of his age should be, he’s active, trying to walk, and has real character. Apart from his scaring, the need to take daily medication, and the regular check ups as he grows up, and maybe a couple of operations later in childhood to allow for growth, he’s fine. If you met him out in the street, or at any playgroup without first being told his history you simply would not know any difference between him and any other baby the same age.
Yes, it’s very scary at first, and it’s only natural to worry, if you are finding it difficult to cope with as a family, speak to the little ones health visitor, she may be able to put you in touch with support groups in your local area, or talk to your GP, who could refer you for some counselling help for yourself.