[LoveMyDoggie]

Did they say "pulmonary atresia" or "pulomonary stenosis"?

[bunniswife]

Originally Posted by LoveMyDoggie

I am a doctor but this is not my field. I'm a pathologist. I have seen this heart defect a few times. I trained at Johns Hopkins where Dr. Blalock pioneered the first and very brave surgery on a tetrology of fallot baby years ago. He is a hero at Hopkins and it changed everything. None of these babies used to make it and now survival is fantastic. Anyhow, like I said its not my field but I know enough to undertand what has gone wrong with the anatomy and that these surgeons are amazing at what they can reconstruct. There are variations in tetrology of fallot with some being more severe. Pulmonary atresia adds a bit more to the severity but still I did a quick pubmed search and without committing too much I was seeing survival rates above 90% with minimal complications. Lyn

Thank you...our cardiac clinical nurse gave us a website to visit at John Hopkins. She said it gave some of the best information ever...Johns Hopkins Children's Hospital | Cove Point Foundation | Home Page I haven't made it there yet but I will later once I get a grip on my tears. She told me to look up double outlet right ventricle, tetralogy of fallot with pulmonary atresia and something called MAPCAS whatever that is....Some of the other information that I have gotten on his condition have said it's often fatal, including info from the American Heart Foundation. I guess being in pathology you see all kinds of things that can go wrong...I'm so hoping this can be ok.

[AMKD]

I am so sorry. My heart hurts for you and your DH. You and your precious baby boy are in my thoughts and prayers.

[bunniswife]

Originally Posted by LoveMyDoggie

Did they say "pulmonary atresia" or "pulomonary stenosis"?

Pulmonary atresia. At our first scan they said tetralogy with either pulmonary atresia or conotruncal arteriosis.

His echo report reads that he has a large overiding aorta with VSD and the RVOT/PA could not be seen. There is a suggestion of retrograde flow to a PA but this is not clear. Dopplers could not be done. Diagnosis is tetralogy with pulmonary atresia or truncus arteriosus. Surgery will depend on diagnosis. Will need delivery here. ICU care, +/- PGE and urgent cardiac assessment. Prognosis depends on exact diagnosis and prematurity.

[CatIz1]

I am so sorry that you are going through this. You and your baby boy are in my thoughts and prayers.

[Lawyerlady]

Oh my gosh, Bunni, I am so very sorry. I wish I knew what to say. We are all here for you and praying for your little boy.

[carisa1978]

I am so sorry Bunni, I know you are probably so scared right now. I wish there was something I could say to help you. I will be pray for you and your little boy.

[bunniswife]

Thank you all for the support, I truly need it right now. I have called our family to let them know what's going on and we are lucky to have alot of love and support from not only them but our community. We are being cared for financially by the Knights of Columbus and the Lions Club right now and we're hoping that if we need to travel out of country for care that our medical expenses will be covered...I'm just so overwhelmed right now.

[hannah01]

i just want to say how sorry i am that you're going through this ... i can't even imagine the worry you must feel. you and your little sweet babies are in my prayers.

[Neta]

Originally Posted by LoveMyDoggie

I am a doctor but this is not my field. I'm a pathologist. I have seen this heart defect a few times. I trained at Johns Hopkins where Dr. Blalock pioneered the first and very brave surgery on a tetrology of fallot baby years ago. He is a hero at Hopkins and it changed everything. None of these babies used to make it and now survival is fantastic. Anyhow, like I said its not my field but I know enough to undertand what has gone wrong with the anatomy and that these surgeons are amazing at what they can reconstruct. There are variations in tetrology of fallot with some being more severe. Pulmonary atresia adds a bit more to the severity but still I did a quick pubmed search and without committing too much I was seeing survival rates above 90% with minimal complications. Lyn

hi lyn the info u gave to bunnis was awesome, and John Hopkins is the mothership of heart technology, Bunnis I wonder would Maryland be closer to you if ur baby would need to be treated? You could do a little investigating ur self by calling John Hopkins this could also help alleviate some of that stess that is not good 4 u or ur babies right now. Lyn that is not the blue baby syndrome right? I am in maryland as well, bunnis I will be praying 4 you and if you need me to find numbers 4 you since it is long distance I can. and I can PM them to you. Praying for you and yours,
Neta

[roxyv78]

Oh Bunni, I just can't imagine how horrible this is for you. I'll be keeping you and your little boy in my thoughts.

[bunniswife]

Originally Posted by Neta

hi lyn the info u gave to bunnis was awesome, and John Hopkins is the mothership of heart technology, Bunnis I wonder would Maryland be closer to you if ur baby would need to be treated? You could do a little investigating ur self by calling John Hopkins this could also help alleviate some of that stess that is not good 4 u or ur babies right now. Lyn that is not the blue baby syndrome right? I am in maryland as well, bunnis I will be praying 4 you and if you need me to find numbers 4 you since it is long distance I can. and I can PM them to you. Praying for you and yours,
Neta

We're actually in BC so I think San Francisco is closer. But please, send me the numbers anyway.

As for that being blue baby syndrome, our doctors told us he would be blue within a short time after his birth because of the red and blue blood mixing through the hole in the heart....I don't know if that's the same though.

[Krista]

Bunni- I'm sorry you are going through this. I have to share that my BFF from college has a son w/ a congenital heart defect. The same cardiologist flew to Portland Oregon to deliver him 6 years ago.

He had "reconstructive" heart surgery minutes after he was born. Then a second surgery just after his 4th birthday. He'll need another surgery in his teens.

Meeting this charming boy you'd never know he had a defect. He was a bit small for his age, and ran out of breath easily, but now he is doing great. There is hope!

I know when he was born they has the entire extended family in the hospital and swore to love him as long as they had him.

In the mean time make sure you are taking care of yourself. That is the one thing my friend regrets. If the Dr offers you something for the anxiety don't be afraid to take it.

I hope this helps!

[holliej1181]

I'm sorry you are having to deal with this. You are getting some great advice here. It sounds like the drs are doing their best to take care of you and your precious babies. I pray that you can stay strong and try to think positive. We are blessed to live in 2008 when we have great drs and technology to save lives.

[futuremom2b]

Bunni,
I can't belive all that you have already been through and now THIS. We will all be thinking about you and we will keep your family in our prayers.... It sounds like you are being proactive in getting the right players on board! I pray that God lines things up for you to have the best team possible, and that he gives you the stregnth to get through this.
Blessings.