Hi Kayla!
Thank you for posting and all the others for your stories as well. Our son, Andrew, born this year on June 4th, was diagnosed with TOF at 2 days old as well. We had a 20 week ultrasound, but they didn't detect it. Andrew was born at home and our midwife detected the murmur at her 36-hour home visit and went with us almost immediately to Children's hospital in Neenah, WI. He was diagnosed several hours later by Dr. Sara Creighton. Right now they are hoping to perform surgery in October or November. He just started Propranolol to buy him some time because his pulse ox was trending a bit lower than it was in the first few weeks. It seems to be working well so far. Interesting that 2 of our children have now taken that medication...our 2nd son was born with a hemangioma which propranolol is also used for.
I know they say TOF isn't hereditary, but it seems coincidental that my uncle has TOF as well. He had a successful surgery 34 years ago and a valve replacement 3 years ago and is doing great still today and has 2 children :) It's definitely a blessing to join in discussions with others who have gone through the same thing.
We have discussed many questions and concerns with the cardiologists already, but I wonder what all of your experiences are in the days after surgery, in hospital and at home. What will it be like for Andrew and us while at the hospital? What types of things do you have to do for their recovery? Do you have any recommendations for the care of other children in the family while we are at the hospital and how to prepare them for the upheaval in their routine? Any other thoughts or advice are welcome!
Finally, I read a few times that TOF babies are usually small....Andrew was born 10# 14oz. I imagine he'll be taller than our other 2 boys and will be nice and beefed up for surgery :)
Thank you in advance for your advice!
Paul and Cassy
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Cassandra Glander
Oshkosh WI
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Original Message:
Sent: 03-03-2017 21:07
From: Kayla Childs
Subject: TOF
Hi! I have just recently joined. My son who is now 4 months old has his TOF repaired in January. It's been a scary road as he was diagnosed 2 days after birth. Just looking for others out there willing to share their stories and experiences.
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Kayla Childs
Augusta GA
(704) 449-7427
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