Mended Little Hearts Open Forum

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TOF

  • 1.  TOF

    Posted 03-03-2017 21:07
      |   view attached
    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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  • 2.  RE: TOF

    Posted 03-07-2017 09:23
    Hi Kayla!

    Thanks for sharing. Your little one is TOO CUTE! We have a lot of TOF families so hopefully they will make their way here soon. My son was born with an AVSD that was repaired in 09. He is turning 8 next week. I can't believe it. 

    Welcome to the communities. 

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 3.  RE: TOF

    Posted 03-08-2017 09:49
    Thanks for your reply! I am so glad to hear he is doing well. This has been so scary, but to see my son now even 6 weeks post op, you would never know the battle he has been through.

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    Kayla Childs
    Augusta GA
    (704) 449-7427
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  • 4.  RE: TOF

    Posted 03-08-2017 10:23
      |   view attached
    I agree! I think our kids are so resilent. It's amazing. Here is my son (With his sister over the summer at a MLH event)...he turns 8 next week. I can't believe it!

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 5.  RE: TOF

    Posted 03-15-2017 21:33
      |   view attached
    Hi Kayla, 

    I'm a heart mom to Cuyler, born with TOF also diagnosed at 2 days old in the NICU. I was also very worried about this new path we were taking (I also have an older son and now a younger daughter- both heart healthy). 
    Cuyler had his open heart at 4 months old, 5 holes were repaired, three blockages removed and his pulmonary valve replaced. 
    He is now (and always has been) and incredibly strong and rambunctious kid. 
    Let me know if I can answer any questions or help support you along the way. 😊




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    Amanda Stewart
    Pittsburgh PA
    (412) 519-3239
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  • 6.  RE: TOF

    Posted 03-16-2017 08:37

    Hi

     I am also a fellow heart mom to Jeremy. Jeremy was diagnosed with tof when I was just 18 weeks pregnant so we knew ahead of time that he had issues. He also has other medical problems for which he had other surgeries as well. His open heart surgery though was when he was 3 months old. If I have learned one thing during all of this it is to follow your gut instinct when it comes to your child. My son has been so tough and is the strongest kid I know. If you ever need to talk and just have someone to listen I can do that and give any support that I can. These kiddos can overcome more than what people give them credit for. Stay strong and take care of that little boy.

     

     

    KELLY SCHILLING
    CLIENT ACCOUNTING AND REPORTING SPECIALIST
    BNY Mellon

    Global Institutional Accounting Pittsburgh
    One BNY Mellon Center

    500 Grant Street / 151-1335
    Pittsburgh, PA 15258
    T 412 234 1956
    KELLY.SCHILLING@BNYMELLON.COM

     


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  • 7.  RE: TOF

    Posted 03-17-2017 13:21
      |   view attached
    Hello!

    My name is Donna Ermis and our son Joshua who is now 15 was diagnosed with TOF A week after birth. They detected a murmur in ths hospital when he was born but was not diagnosed until we went to a Pediatric Cardiologist and then went to another for a 2nd opinion, we decided to stay with doctor that gave us the 2nd opinion which was Dr. Schroeder of Pediatric Cardiologist then he moved to OK, then we got Dr. Brownlee and several years passed and he moved to Corpus and now we have Dr. Zamora. ALL HAVE BEEN AWESOME!!! Joshua has had 4 open heart surgeries his first was 3 months after birth, he had so many because his pulmonary valve replacement keeps shrinking. He shows no sign of TOF other than the VALVE shrinking. We expect another surgery soon. We just went on March 7 to discuss for surgery this summer BUT we were HAPPY to learn that his valve got 1% BETTER!!! We will know go again on May 15(please say prayers) to see how he is doing and hopefully it will be the same and we can postpone surgery until next year. Doctor seemed optimistic so we are going with that. HE did say however that once they put the new valve in the clock begins to tick AGAIN!

    Now about Joshua he is MY HERO!! For a young man that has had 4 open heart surgeries and never once has complained, NEVER! He is amazing, he wrestles with his brothers and sisters, he has run track, played football, played basketball however he figured out that he didn't like any of those things accept wrestling with his siblings. LOL! He loves, I mean loves the WWE he can tell you anything you want to know about anyone at anytime in their career, even if it happened before he was born. LOL! He wants to be a manager in the WWE or announcer!

    If anyone has any questions they feel I can answer please do not hesitate to ask. I will do my best to help you.

    Thank you, Donna Ermis mom of a HEART HERO!

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    Donna Ermis
    Hobson TX
    (830) 299-2027
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  • 8.  RE: TOF

    Posted 04-12-2017 11:13
    Hi, our son was born 29 years ago and was diagnosed with TOF at about 6 weeks during our first visit to the pediatric cardiologist.  They realized something was wrong when he was born but we didn't get the diagnosis until after testing at 6 weeks.  We were fortunate in that he didn't have his repair until he was 3 years old.  He had his pulmonary valve replaced at 15 years old and then again at 21.  His second valve replacement was with the transcatheter valve procedure where they went through his groin and placed the new valve that way, much like an angioplasty procedure.  He continues to live a full life and is engaged to be married later this year.

    I tried to attach a picture but wasn't able to.  He is 6'6" and according to our pediatrician when he was young, babies with TOF are supposed to be small.  He was 8 lbs. 10 ozs., 21" long when he was born so he's never been small.  :)

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    Nora Hillard
    Miamisburg, Ohio
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  • 9.  RE: TOF

    Posted 04-13-2017 10:31
    Hello,

    Our son was diagnosed with TOF with pulmonary atresia at the 20 week ultrasound.  It was one of the saddest days of my life, but it gave us the power to seek out the best cardiology department and cardiovascular surgeons.  Instead of worrying about the delivery, our focus changed to determining the best care for our new baby.  We went to Lurie Children's Hospital in Chicago, and have never looked back.  They continue to provide an amazing level of care.  When he was born, they let me hold him for a few precious minutes before they took him across the way to the children's hospital.  I had the confidence that he was in good hands, though that was a tough stretch waiting several hours to see him until he got settled in.  He had his first surgery at 7 days old.  He was born small, and continues to be a the lower end of the growth charts, so his second surgery (the "complete repair") was not until he was 7 months old.  He has graduated to 6 month appointments, monitoring the narrowing of the branches of the pulmonary arteries.  No one can say when approximately his next surgery will be, or if he will have to have a catheterization in the meantime, but it appears that the longer the better when it comes to these things.

    Tommy is a high-energy, sweet and fun-loving 32-month-old boy.  I thank God every day for him, and I tell Tommy every day that I am so lucky to be his mom.  He loves playing with cars, trains, and dancing and goofing around with his 20-month-old sister Molly.  He is so active that sometimes it's hard for Mom and Dad to keep up!

    I guess we all strive to achieve balance with our personal versions of normal.  Good luck on your journey.  And relish the joyful moments that abound!

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    Katie Duhig
    Chicago IL
    (708) 743-5558
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  • 10.  RE: TOF

    Posted 07-23-2018 22:58
    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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  • 11.  RE: TOF

    Posted 08-07-2018 01:19
    Hi Kayla,

    I can't imagine what is going through your mind right now, but I would like to offer this as some hope.  My name is Ben.  I am 23 years old and I was diagnosed with TOF at birth.  Your son has a long road ahead of him, but I promise you he will have every opportunity to live a happy and fulfilling life.  There will be bumps in the road.  I was never able to run as fast or as far as my friends, but I was still a very active little boy.  I played baseball growing up and was even a member of my high school team.  I also participated in marching band in high school AND college.

    Your son has a long and happy life ahead of him and I wish both of you nothing but the best.

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    Benjamin Cohen
    Lubbock TX
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