We have just discovered on our twenty week scan our baby boy has pulmonary atresia. He will require a operation when he is born. My wife also done a test to see if our baby will have Di George syndrome. This is a real worrying time for us and i cant really find anyone else who has gone though the same thing? Is there anyone else out there? Is there anyone else who has gone on to lead a normal healthy life? I understand our baby will need a few operations in his first few years of life.
I would love to hear some nice stories about this as we are both feeling pretty down at the moment.
Written by
Newdad1988
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13 Replies
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Dear Newdad1988
So sorry to hear your news, all I can send is love, thoughts and prayers.
The advantage of pre natal screening means that the various health professionals involved can plan the care that your wife and your baby will need in advance.
My nephew has open heart surgery when only a few hours old. Im not sure of the exact problem but he needed stents fitting. As he grows the stents need changing every now and then. He is 6 now a happy little boy doing well in life going to school etc. Its such a worrying time for you but its amazing what can be done these days. Hope this reassures you at least a little.
Thanks for the reply. Thats great to hear, its the unknown that’s really scary, we just hope our wee boy can have a normal as possible life and do things just like other kids.
I do not know if it is still active. It is private so you'll need a fb account and request to join, but the intro says that it is specifically for those whose little ones are affected by this condition.
If it is still active, I hope you might be able to link up with others whose experience is similar to yours; they will know exactly what you're all going through.
Hey! I had to look back on what I originally said. We got our results back and there was no Di George or any other problems. They then also discovered it was truncus arteriouses which is a bit different but still very serious. Our wee baby Harrison got operated on at three weeks and it was a huge success thankfully. We spent about 5 weeks in hospital all in all. It was such a hard time but Harrison done amazing. He’s totally thriving now, no restrictions, he’s just like any normal baby. He will need operated on again a couple or more more times as his heart gets bigger to replace the conduit they put in. Not sure where you’re from but the local paper just done an article on him and it was front page news, it’s this weeks Inverness courier in Scotland 10/06/23. It’s definitely a feel good story and hopefully helps other parents in the same situation. How are you guys getting on?
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