Heart problems

Hi,
I posted two weeks ago saying that one of the twins had a heart problem most likely a VSD (hole in the heart). We went back today to see if she had moved into a better position for them to look at the heart. She hadn't (no matter how much I rolled, wriggled and walked she wouldn't turn over!!!) Anyone, despite the bad positioning we were told she had what is called a DORV (Double outlet right ventricle) as well as a VSD. This means that her two main ventricles are feeding into the right side of the heart rather then one to the left, one to the rihgt. We are off to see a peadiatric cardiologist next week and I need to change where I am delivering to be close to the Children's Hospital. This also means I will need to change obstetricians as he doesn't deliver there. I was just wondering if anyone else had expereinced a 'DORV' and what the outcome was. Also, I just need to vent, I am exhausted and drained. My husband is so optimistic (and I know he is trying to be strong for me) but I worry he isn't being realistic. I suppose I don't really have a question, I'm just a bit lost... any advice??

kittymumxxx

 

I haven't got a darn bit of advice, but I can tell you I'll be keeping you all in my thoughts! I'm sorry-this must be unbelievably tough-I can't even imagine. How wonderful that you have such a supportive and positive husband! They're often much more intuitive than we realize, those boys of ours-so his gut feeling just may be the one to go with!
Lots of hugs to you guys!

 

Oh Kittymum, I am sorry for the news and will be keeping you and your little ones in my prayers. Please kee us updated...
BigBig :hug:

 

You are in my thoughts and prayers. We are all here for you.

:hug:
Heather

 

:hug: I'm sorry you have to worry about this Momma. I'm sending many positive thoughts your way and keeping you all in my thoughts. Please keep us posted on things. :hug:

 

Lots of :hug: :hug: and prayers being sent your way.

 

When my cousin was pregnant with a little girl they told her that she would need surgeory right after birth because she had a hole in her heart. All of our familys and their churches prayed for her. When she was born it was still there, but she wasn't strong enougth to do the surgeory right away. They waited a week and put a prayer cloth over her. They did a scan to see right where the hole was right before they were going to do the surgeory and it was completely gone. So they didn't have to do anything and she went home the next day. Now she is a healthy and very active 6 year old. I don't know how bad the case is with your little one or what they are planning to do to treat it but prayer is a powerful thing and the only thing you can do is ask that everyone pray for her. Good luck and I hope it works out for you! And I will remember your little one in my prayers.

 

I don't have any advice, but my nephew had something similar to your baby...I can't remember all the details( he's now 9yrs and doing great). He had to have surgery couple days after birth and stayed in the hospital for several weeks and meds for another year until second heart surgery. It IS possible to have great outcomes, so try to keep up hope. Sending lots of T/P's your way!!

 

My doctors are nervous for Baby B's heart as well, because we expect him to be born with Down syndrome. Fifty percent of babies born with Ds have a heart defect. I go in for a fetal echocardiogram on Thursday and am really scared. I'm right there with you. I have, however, heard what someone else mentioned about holes healing themselves, so maybe there is hope for your baby. Good luck!

 

My twin a this time has a hole in his heart as well. Jan 5th we have to have a more detailed heart study done on him.

My almost 7 yo twin b was delivered at 28 weeks due to a heart abnormality. When he was strong enough for the surgury his hole had closed!! Hope and faith will bring you a long way in this.

 

I tried looking up DORV in my nursing textbook (I graduate in May) but didn't find much info on it in there. The only thing it really said is that it pretty much goes hand-in-hand with a VSD (and some other medical jargon...). The prognosis depends on many factors and variables, but overall the outcome is good. I remember caring for a 6-day-old in the NICU during one of my rotations (the unit where I want to work) who was there for something very similar to DORV (in addition to VSD). She handled the surgery very well and came out with a great prognosis. Her little 28-day-old neighbor handled her VSD surgery perfectly as well.

I know you must be scared, but there are many people thinking of you and praying for your babies. Please keep us updated and I will continue to keep your family in my prayers.