Pulmonary atresia

[Newdad1988]

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.

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Dear Newdad1988

So sorry to hear your news, all I can send is love, thoughts and prayers.

[Milkfairy Heart Star]

HelloNewdad1988

Welcome to the forum, I am sorry to read the reason that has found you joining us.

There are a few other organisations and groups who maybe able to help you further. They are for parents and babies born with heart problems.

arc-uk.org/

chfed.org.uk/how-we-help/in...

tinytickers.org/

Di George syndrome is not very common, however it is good to see that your wife is being screened.

Sometimes babies with cleft lips or palates are found to have Di George Syndrome.

clapa.com/what-is-cleft-lip...

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.

I hope you find the support you need soon.

Good luck.

[Newdad1988 in reply to Milkfairy]

Thanks for your reply, this is very helpful

[Villagelife]

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.

[Newdad1988 in reply to Villagelife]

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.

[Villagelife in reply to Newdad1988]

It is scary stay positive though, hope you will keep us informed when is the baby due?

[Newdad1988 in reply to Villagelife]

Yeah i will and hopefully we will have a happy ending and give hope to other people in the same situation. Due on September 28th

[Villagelife]

Sending you love & hugs take care.

[MoyB]

I'm not religious but I do still believe in the power of prayer so I'm adding you to mine and hoping that your baby has a good outcome. xx Moy

[bridgeit]

Hello Newdad. I wonder if you've seen this facebook account?m.facebook.com/groups/26961...

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.

I hope it's of some use for you.

[Newdad1988 in reply to bridgeit]

Hi there, thanks very much for this, i joined it a few days ago its a great help and really reassuring

[jenwarb07]

Hey, I know you posted this a year ago but I'm new to the site.Our daughter (now 5 months) was born with pulmonary atresia with VSD and mapca's.

We were very lucky, no digeorge and hasn't had any operations and only on prostaglandin for a week.

We're not sure how it's going to go as the cardiologists at alder hey aren't sure either.

How's your heart journey going?

[Newdad1988]

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?