lsweeney88
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lsweeney88, May 25,  2019  5:20pm EST

CHD Tetralogy of Fallot

My name is Lora and I am 22 weeks pregnant with a precious baby boy, our first child. This week my husband and I were told by the pediatric cardiologist that our son has a congenital heart defect called Tetralogy of Fallot. I would love to hear from other parents whose children were born with this defect and to hear about their experiences. 

6 Replies
  • AHAASAKatie
    AHAASAKatie, May 29,  2019  10:33am EST

    Good morning,  Thank you so much for sharing what is happening with your baby. I can provide the information we have on Tetralogy of Fallot to help you with the information piece of this. I look forward to reading what our members are able to share as well. Please know that we are here for you during this time. Best Katie

  • renshiwo
    renshiwo, May 29,  2019  7:13pm EST

    Hi Lora. Congratulations on your baby! It is so hard to hear that your little one has a heart defect. My son was born with Tetralogy of Fallot with pulmonary atresia in 2012. One thing I will say is to be prepared for your son's diagnosis to change a bit as he grows. Sometimes the full anatomy of the heart can't really be known until the doctors can get images after birth, so there will probably be a lot of unknowns for now. Some of those unknowns could affect your son's treatment. Because our son had pulmonary atresia (no pulmonary valve rather than just a thickened valve - pulmonary stenosis), he needed to have surgery right away after he was born. Some TOF babies can grow for a while before they need surgery. Also, you probably want to know anything and everything about TOF and your son's prognosis. Just be aware that treatments have improved tremendously in the past decade, so if you find outdated information it could be unnecessarily scary. It's always best to look for up-to-date, reputable sources and talk to your son's treatment team. My son has had two open heart surgeries and two cath procedures. He's seven now, is hitting all of his developmental milestones, and has no limits on his activities except that we should steer him away from things like power lifting and wrestling that require sudden pushes of effort. It has been scary and hard but he is a great kid and our lives are so much richer with him around. If you can, set up a support network for you - someone who will have a standing coffee date or phone call. It's very common for this journey to have mental health repercussions, so don't be afraid to reach out for help from family, friends, and professionals. It's hard, but you are stronger than you know. Best of luck to you and your little one!

  • lsweeney88
    lsweeney88, May 30,  2019  7:12am EST

    Katie,

    I would appreciate any and all information you have! We have some information from the pediatric cardiologist, but I think having things explained in several different ways is helpful, especially since I'm not in the medical field. 

  • lsweeney88
    lsweeney88, May 30,  2019  7:19am EST

    Renshiwo,

    Thank you so much for your response! It has been really helpful for me to hear about others' experiences with TOF. Was your son's TOF diagnosed before or after he was born? Was his first surgery open heart surgery? What was his recovery like? Did your son have any tet spells? You made a lot of good points and I really appreciate your perspective an advice. Thank you for taking the time to respond and encourage me in this journey. 

    Lora 

  • Tamilaw45
    Tamilaw45, June 6,  2019  9:54pm EST

    Hi Lora. I am a parent of a child born with Tetraology of Fallot with pulmonary artresia. She is 8, happy, healthy, and super active. My daughter was diagnosed while I was still pregnant with her. She was born at 33 weeks and had her first heart surgery at 1 years old and first open heart to put in her missing pulmonary valve before she turned 2. She had her 2nd open heart last year at 7. Her condition has never slowed her down. She does gymnastics, swims, and any and everything that any other active child does. She says her heart condition makes her brave. I know its scary as a parent. I remember the moment that I was told about her condition during my pregnancy. It was soul crushing. I recall the fear and worry and tears. Please be encouraged that there are amazing doctors and caregivers and the technical advances are mindblowing. My daughter is seen by her cardiologist at least 2 times a year. She will have to be monitored all of her life. Stay positive. Do research on the condition but dont let it scare you. If you believe then stay prayerful and trust in God to take care of your baby. Surround yourself with support. You will need your strength for the road ahead but you and your baby will be fine. I will say a prayer for your both. 

  • lsweeney88
    lsweeney88, June 13,  2019  9:57am EST

    Hi Tamilaw,

     

    Thanks so much for responding! I would love to ask you some questions about your daughter and the journey your family has gone on. If you don't mind, send me an email at nappiersweeneywedding@gmail.com. Thanks for praying! 

     

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