Heart defects

  • Hi,

    Im 31 weeks pregnant and we found out a month ago that our baby has a heart defect. :( Its Tetralogy of Fallot. We are getting used to the fact now but I am terrified for her, having to have open surgery at 4 months old. This is our first child so lots to learn just being a new Mum, and then having to cope with the surgery.

    Just didn't know if anyone else out there was going through anything similar??

    Caz :)

  • Hey Caz - 

    Congrats on your little girl. :-) I'm so sorry you have to deal with such a frightening diagnosis. I have not personally had a baby of mine with a heart defect but have taken care of babies in the NICU as a nurse with heart conditions. Just know that nurses and doctors will be with you every step of the way - if you don't understand something or the information you are getting isn't clear, just speak right up and ask for a clearer explanation, alternative options, etc. Hang in there - I'll be keeping you in my prayers. Hugs. 

  • Hello Caz... I have not had a similar situation, but I want you to have faith and think positive thoughts. Not sure in what part of the country you are located, but it has been my experience that there are incredible medical resources out there who will work very hard to help your child overcome this heart defect. I would be more worried about you if you were not freaked out by all of this, but it has been my experience that educating yourself as much as possible is a great way to help cope with the stress that you are feeling. Make sure you get plenty of opinions from doctors and make sure your baby has the best medical care possible, no matter the distance you must go to find it. Strongmoms is always here to give advice or just a place to help you vent to relieve your stress. Good luck and I am praying for your baby and your family.

  • Caz-

    Congrats on your pregnancy.  Like Julie I have taken care of lots of babies with heart defects.  There has been so much progress in treatment of babies with heart defects and I've seen so many have a good outcome.  I agree with Julie-rely on those nurses and doctors, ask lots of questions and then take really good care of yourself.  Please continue to post and let us know how we can best support you.

    :) Jess