My 12 week old beautiful son born with Tetralogy and Digeorge; Just need POSITIVE success stories

Posted , 4 users are following.

My angels story. My baby was diagnosed with Tetralogy at 2 days old and Digeorge at a little over a week old. Heartbreak is an understatement. His dad and I lived at the NICU for over 3 weeks. He is my 4th son by the way and my 1st to have this. He was kept at the NICU for so long because of feeding issues and his calcium was low (labs everyday at 5am was the worst for my little love) so he was put on calcium supplement and calcitriol.. since then he was taken off calcium because it has maintained great but he still takes the calcitriol once a day. He was also on a feeding tube and that was taken out once he could eat 2oz on his own and then we went home. Since he's been born it's been non stop Dr's he literally has a team. But when I say he is amazing I truly mean that. He is hitting all this milestones was rolling over at 4 weeks old, smiles all the time, talks to us, tracks sounds, makes great eye contact, holds his head up great. The only issue is his little heart is burning calories so fast weight gain is a problem PLUS he has strider (noisy breathing/floppy tissue above the voice box) which gets better on its own but in his case might have to be repaired before surgery because that's also burning calories making it harder to gain weight. He's currently on 24 cal and that has helped. His surgery is scheduled for November 11th but the roof of his mouth was blue tonight while he was crying I noticed it for the 1st time and his oxygen level was 84.. but it climbed thank god and stayed above 90 so we'll be keeping a close eye on that. BUT really with all of this I focus on the positive with him he's just so amazing such a little fighter wants so much to be happy .. I honestly forget all this is happening until I go to one of his many dr appointments or his home nurse comes here. I really need to hear positive stories, success.. great things children with TOF and Digeorge have done and what they've overcome , the difference after surgery. This is what all parents with children that are battling things like this need to hear.. there has to be light at the end of the tunnel. So please share the good things <3 Thank you and God bless you all and your beautiful babies

1 like, 4 replies

Report / Delete

4 Replies

  • Posted

    Hi mamaof489 - I am not familiar with DiGeorges syndrome but I wanted to let you know that I had open heart surgery for ToF in March of 1986 and am currently 32 with no restrictions. I'm also the proud mother to a beautiful and healthy 6 year old girl. I saw your post and felt very strongly that I had to share my story with you. Many adults have had ToF correction procedures and go on to live full and healthy lives. I hope your little guy continues to do well and comes out on top of all his challenges.

    Report / Delete Reply
  • Posted

    Hello I am 14 and I am a have TOF. When I was born my doctors said there was nothing wrong with me, but when my pediatrician saw me for the first time, she didn't think so. The doctors found out that I had TOF and told my family that I might not make it. When I was 4 month old, I was finally able to get surgery. I don't how I lived through it all but it most have been a miracle. I was totally fine after that. Until I was 13. I have been getting MRIs for since  I was was 10 And My heart had been getting  worse and worse. I had one more MRI in April of 2015. I went to Boy Scout camp over the summer and when I got back I was told that I needed another surgery. So in August I had another heart surgery and since then I am better then ever I still need a small surgery ever 10 years, but other then that I am perfictly fine and will hopefully stay like that. Anyway I'm sure ur child will be alright. My doctor said I was the worse case of TOF he had ever seen or heard of, so I'm sure ur son will be fine and will be able to live with TOF. Good luck to you!

    Report / Delete Reply
    • Posted

      Thank you so much for sharing your story Michael. I was told I will need another surgery and/or a pacemaker eventually. I just got diagnosed with atrial fibrillation so that might be happening sooner than anyone was thinking about but sometimes we just have to take things one minute at a time. God bless you sweetie xo 
      Report / Delete Reply
  • Posted

    I was born in 1975 with Tetralogy of Fallot. Got open heart surgery at 22 months of age. It was a success. Got another one at 18 years old to replace a pulmonary valve. Another tremendous success (i never took anti rejection medication). I'm now 41 years old and doing better then ever. From Canada, god bless!

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up