I had the fetal ultrasound for the twins yesterday. The girl is still in perfect health. The boy is another story. He has something called Tetralogy of Fallot. Simply put, he has 3 chambers instead of 4. By 45 days of conception, his heart should have full developed. Instead, his genes decided that his aortas will be ok, but the ventricles will not separated into separate chambers. Optimistically with modern medicine, the outlook is pretty good. He can live a long lifespan and I can have a normal pregnancy. Unfortunately, since the heart had formed, the ventricular muscle will not grow anymore. He will have obstacles along the way where he will have heart surgery to separate the ventricular chambers at 4-6 months. Up until recently, they were performing this surgery at the teenage stage. We won't know more until he is born, but I will have more fetal echos in the meantime. They need to see him once he has entered this world to do an official echo on him. Due to the plumpness of arteries, the doctor seems optimistic.
It's definitely a lot to take in and I was exhausted yesterday to look up more information on tetralogy of fallot. I'm sure I'll read a see saw of stories. I'll try not to let those stories discourage me. I just want to feel prepared. This disease will be apart of our lives, so I will embrace it. Speaking of discouragement, I have told several people about his disease. I really don't understand some comments that come out of people's mouths. In my mind, survivability, love, and health are the most important things when having a child. Instead, I have family members worried about abnormalities and deformities. Is that really what matters? Why do people bring you down? Aren't I under enough stress? Can't you just be happy or worried about the diagnosis and prognosis? His disease isn't my big stressor, it's the unsupportive comments that stress me out.
I continue to feel blessed to incubate the 2 littles ones. They are our miracle gifts from above. We will do everything in our power to give them all the love and happiness they deserve.
I know this is an old post but I wanted to let you know that I was born with Tetralogy of Fallot and have thrived and succeeded with minimal intervention. And that was long before all the technologies they have today. I'm sure you've learned alot about TOF in the meantime but just wanted to let you know that many of us have had wonderful lives with TOF. :)
ReplyDeleteHi Ducky. Thank you for shedding light on TOF. Although my story wasn't so optimistic, which is probably why I didn't continue my blog. My twins were born at 34 weeks. My son died hours after birth, not due to TOF, but the cystic hygroma got in the way of him being able to breathe. We found out later he had Noonan's Syndrome. My daughter was in the NICU for 30 days and is home now still learning to coordinate eating and breathing.
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