[bunniswife]

Well Shane and I had our follow up cardiac echo for our twins today and it looks like we're back to the original diagnoses. Our baby boy appears to be missing his pulmonary artery as well as having numerous other defects of his heart. I'm devastated. I can't stop crying, all the hope we had in the last four weeks has been dashed to the ground and everything is uncertain again. His defect is so complex the pediatric cardiologist we saw today has brought up flying him to San Fransisco after his birth. Apparently one of the best pediatric cardiologists in the world works there (we live in Canada). I feel so hopeless right now, I can't even begin to explain how much this hurts my soul....knowing there is a good possibility our little boy won't live. It doesn't seem fair after all we've already gone through trying to have babies and all the ones we've lost already. I feel so alone. Please, please pray for us...

[Tanya75]

I am so sorry. I will keep you and your little ones in my prayers!

[Mom2MandyandTristan]

Oh Bunni....you will be in my prayers as well as your precious little boy. I can't imagine how scared you must be but thankfully this isn't the end. As you mentioned the doctors are planning thier course of action to ensure the best possible outcome for you and your son. It might not feel like much right now but your son is going to get the best possible care available to him and that will give him the fighting chance he needs to get through this. I wish I knew what to say to help you through this time just know I am hurting for you but will not let that stop me from sending you lots of thought and prayers.

[jencat215]

oh sweetie, I am so sorry to hear this. Since you are being induced, can you make it out to San Fran. to deliver?

[bunniswife]

I don't even know what to think right now. I'm so confused as to how they could tell us a month ago that he DID have a pumonary artery and that it had good positive flow and now they say he doesn't have one after all and that they don't even see the branch of the pulmonary artery that feeds his lungs. I'm so scared right now. I don't know what's going to happen, it seems like all the hope we were given last month is gone again. Originally when we were first diagnosed at twenty weeks we were offered selective reduction but after all we've been through trying for children we refused. I guess that should have told us right there how bad things really are....not only is he missing his PA but he has a hole in his heart, only one aorta instead of the normal three and he has two vessels coming off the right side instead of one on each side. I feel like I'm never gonna stop crying...

[jencat215]

wait-first they see the pulmonary artery, and now they don't? Who is doing the scan? Is it the same person? I really think you need to get a second opinion. This doesn't make sense. Arteries don't just disappear like that?

[JustPeachy]

Bunni - I am so sorry you are going through these struggles right now. I don't have any advice but there is another mother on the forum that has been through several heart surgeries with her newborn. The other moms on the Feb. due date thread under the After Fertility Treatments thread can probably help you get in touch with her. Her name is Trish and her son is Cian and he's about 8 months now. I seem to remember he had his surgery at a specialized hospital in San Diego and she might have advice on doctors. We will all be thinking of you and the babies.

[bunniswife]

Originally Posted by jencat215

wait-first they see the pulmonary artery, and now they don't? Who is doing the scan? Is it the same person? I really think you need to get a second opinion. This doesn't make sense. Arteries don't just disappear like that?

No, at first they said he didn't have one and we were devastated. Then at a repeat scan six weeks later they said he did have one and that it had good positive forward bloodflow which was important. Now they say he doesn't have one again and the doctor (the one who did the first scan) is wondering what the doctors who did the second scan were looking at. They've booked a repeat scan for another four weeks from now but I just don't know what to think anymore. All they did was complain about how difficult my scan was because my babies are so big already...our boy is in the 93rd percentile and our girl is in the 87th percentile. He said it was hard to see because he was getting shadows from eight limbs instead of four but he's fairly confident his first diagnoses was correct...tetralogy with pulmonary atresia/ double outlet left ventricle. Whatever the f**k that means besides a grim prognosis....

[jencat215]

my heart is just breaking for you. this must me just so fustrating. is there any way you can get another opinion? Is this guy who just did the scan the pediatric cardiologist? I know it is a bit different in Canada than here in the US. Can you see a perinatologist? Was this scan done on one of those ultra high tech u/s machines? 4 weeks seems just so long to make you wait.

[bunniswife]

Originally Posted by jencat215

my heart is just breaking for you. this must me just so fustrating. is there any way you can get another opinion? Is this guy who just did the scan the pediatric cardiologist? I know it is a bit different in Canada than here in the US. Can you see a perinatologist? Was this scan done on one of those ultra high tech u/s machines? 4 weeks seems just so long to make you wait.

The doctor who did the scan originally and today is the pediatric cardiologist. The doctor that did the second scan was just a cardiologist. But I had three doctors, the pediatric cardiologist and two perinatologists for the first scan, two cardiologists for the second scan and today I had the pediatric cardiologist and two perinatologists in with me. I'm seeing MFM every two weeks right now. As far as the equipment, BC Women and Children's is the second best hospital in the country next to Toronto's Sick Kids so I'm fairly confident the equipment is Ok. I just don't know if they're going to have an exact diagnosis or know just what we're looking at until he's born and they're able to do a scan of his heart directly. I'm just afraid that they'll come to us afterwards and say there's nothing that can be done.

[LoveMyDoggie]

I cannot imagine how devastated you are. In fact I got a little teary reading your post. Its just not fair. However, tetrology of fallot with pulmonary atresia is treatable and you should be very optimistic. I know it sounds horrible but pediactric cardiothoracic surgeons have made leaps and bounds in this field in the past couple of decades. Survival is fantastic and quality of life is very very good. There are so many synthetic vascular grafts and conduits that can completely replace an aorta or pulmonary artery. I'm sure you are scared and its going to be very nerve racking when your infant is getting surgery but I really believe he's going to be fine. You'll have a tough couple of months of worry but after that he'll be a normal little boy and no one will ever know the drama your family had to endure. Have faith. The science is on your side on this one....the stats are very good. Take care. I hope you feel better soon. Lyn

[jencat215]

Originally Posted by LoveMyDoggie

I cannot imagine how devastated you are. In fact I got a little teary reading your post. Its just not fair. However, tetrology of fallot with pulmonary atresia is treatable and you should be very optimistic. I know it sounds horrible but pediactric cardiothoracic surgeons have made leaps and bounds in this field in the past couple of decades. Survival is fantastic and quality of life is very very good. There are so many synthetic vascular grafts and conduits that can completely replace an aorta or pulmonary artery. I'm sure you are scared and its going to be very nerve racking when your infant is getting surgery but I really believe he's going to be fine. You'll have a tough couple of months of worry but after that he'll be a normal little boy and no one will ever know the drama your family had to endure. Have faith. The science is on your side on this one....the stats are very good. Take care. I hope you feel better soon. Lyn

I read all of this too and the good news is that they found all of this stuff early so something can be done immediately after he is born. The bad news is that you know early and have more time to worry before something can be done. I wish there was something I could say to make this easier. We are all praying for your little boy. Sounds like you have a good team of doctors and are being carefully monitored. It also sounds like your little boy is growing well. I hope there is better news and more enlightment at the next scan.

[bunniswife]

Originally Posted by LoveMyDoggie

I cannot imagine how devastated you are. In fact I got a little teary reading your post. Its just not fair. However, tetrology of fallot with pulmonary atresia is treatable and you should be very optimistic. I know it sounds horrible but pediactric cardiothoracic surgeons have made leaps and bounds in this field in the past couple of decades. Survival is fantastic and quality of life is very very good. There are so many synthetic vascular grafts and conduits that can completely replace an aorta or pulmonary artery. I'm sure you are scared and its going to be very nerve racking when your infant is getting surgery but I really believe he's going to be fine. You'll have a tough couple of months of worry but after that he'll be a normal little boy and no one will ever know the drama your family had to endure. Have faith. The science is on your side on this one....the stats are very good. Take care. I hope you feel better soon. Lyn

You sound like you know what you're talking about, are you a doctor? Because the pediatric cardiologist we saw today told us the only other condition worse than our baby's is hypoplastic left heart syndrome. I'm grasping at anything to give us hope right now...

[tracilynn]

I don't know what to say. I'm so sorry you are worried sick I will be praying that you have some peace in the coming weeks awaiting your next u/s