newborn with hole in her heart, anyone dealt with this before?

Kriss82001Kriss82001
edited April 2011 in Health
Ok, so just got home from a mad dash trip to Alabama, because my now one month old neice has a hole in her heart & we found out 10 days ago. She's out of the hospital now, & they are waiting until she is 4-6 months to do surgery. The Drs are waiting to see if it closes on its own. Its a good size hole in her left side ventricle, & you can hear it no problem. They found the hole because she also had RSV which turned into pneumonia. I'm in the medical field, so I know the medicine behind it, I was just wondering if anyone else has dealt with this, so I can give her some feedback. She's a young Mom & scared out of her mind, obviously. Even if its a bad personal experience, she wants to know. Any experiences would be helpful. Thank you.
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Comments

  • iris_y_juaniris_y_juan
    I'm 22 yrs old nd I was born With a hole in my heart.it was a heart murmur nd I had breathing problems but not bad I guess cause I had surgery at 4 yrs old it was very ruff I can still picture everything like the lights nd my eyes being taped shut cause I couldnt open them nd the pain of sitting up it felt like someone was pullin on my chest nd it was really tight Idk but I'm sure she will be ok I dnt know much about it cause she is a new born nd I was older but she is definitely in my prayers nd I know its gonna be tough god bless nd stay strong =]
  • 2girls_2boys2girls_2boys
    My nephew and my step daugther have the same problem my nephew is 18 months and not surgery my step daugther 3 years without surgery doctors says let them heel by them self..... good luck girl god bless your baby
  • Kriss82001Kriss82001
    @jenn_929 & @iris_y_juan thank you so much for the stories! I felt so bad for her, & that I couldn't stay longer for her. Had to get back home to my kids & my prego body couldn't handle the stress. Still trying to pass info to her. She appreciates the stories too, just trying to figure out what's in store for her. Did they find the hole when you/he were infants or when you were older?
  • iris_y_juaniris_y_juan
    I also played lots of sports nd was very athletic =]] I played volleyball,basketball,football,swimming,track..much more jst stay strong for her nd ur sis
  • pregoWithSecondBabypregoWithSecondBaby
    My cuzin was born with a hole in his heart. He is a healthly 20 yr old n he has never had surgery. I grew up with him an he has never had a problem. Best wishes to ur niece hope all goes well. My prayers go out to ur family
  • iris_y_juaniris_y_juan
    I had it as a infant but it didn't close completely it didn't give many problems until I was more active nd they knew. They had to close it..I was raised by my dad he was a single parent nd when I asked y I had a scare he would tell me I had a hole in my heart nd the docs closed it with gummy bears lol I love my daddy nd til this day if my son ask i tell him the same story
  • 3girls_0boys3girls_0boys
    My youngest daughter was born w aortic stenous which is where the aortic valve is to narrow to allow the blood out of the heart. We where released to go home on sunday and was@ the childrens hospital in indy on monday. Were where told that we would probably b having surgery immediately but were able to wait until she was 4 months as a parent w a child that is born w a birth defe@t is very difficult, and very stressing. @ least they have found it and can correct it. I am praying for u and your family
  • Kriss82001Kriss82001
    Thank you ladies so much! She is starting to relax a little knowing that things can turn out all right and she can still have a happy active little girl. The ER doc when she originally went in told her that it was a good thing she didn't put her in her crib because she wouldn't have lasted the night! And since my niece was already 3 weeks old, she thought she was a horrible Mom and had put her baby in danger. It has been a struggle for the past few weeks, but things are looking up. Thank you so much for the experiences and prayers, they truly do help a lot!
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  • Kriss82001Kriss82001
    @richjen24 Thank you so much, but it's not my baby girl, it's my neice. I just felt so bad because I could tell her all the medicine behind it because I am in the medical field, but I couldn't relate, and we couldn't find anyone we knew that has had to deal with this. It's so good to know that there are happy endings even when everything sounds so horrible.
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  • Kriss82001Kriss82001
    @richjen24 it's no worries, I just wanted to be clear so there wasn't an issue later. I'm just good at percentages and stuff like that, but I know that's not what she wanted to hear. Wish I could be more helpful emotionally, but in crisis, I turn to facts, but I know most people want to hear that other people have dealt with this and everything turned out fine. I really do appreciate. Technology is wonderful. The first couple of nights in the hospital were rough because of the infections, but once the meds kicked in she fought right back and now looks 100% better. She's def a little fighter!
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  • Kriss82001Kriss82001
    @richjen24 def will keep everyone updated! :)
  • sk8rmomma19sk8rmomma19
    I was born with this condition and I'm 19 now. Mine wasnt AS bad but still scary. I get checked every year or so to make sure my heart is still doin okay. I hope the baby will be okay! Just gotta think positive.if I lived through it I'm sure there are many others :)
  • jmaskjmask
    I AM SO GLAD YOU POSTED THIS!!! My boyfriend was born with a hole in his heart he is now 23 and is healthy as an ox....his hole just closed on its own...but I am nervous that our baby is going to have heart problems :(
  • mschopmschop
    @3girls_0boys my BF has the same thing but his was 31 years ago he had his first surgery at 14 days at that time he was the youngest person they ever done it on, and he had his aortic valve replaced when he was 14 something went wrong in that surgery so he had to have a second one with in that year. And earlier he said his chest is hurting so I'm scared crapless that something major is wrong
  • Kriss82001Kriss82001
    @sk8rmomma19 Thank you! We were told that she is more than like going to have to have surgery, but they want to give it the chance to close. Heart surgery is scary, but I think just to know that its on a 4-6 month old is terrifying!

    @jmask I don't think that it's genetic for the most part. Its my fiances sister's little girl, & they have no other history of anything like this that I know of. I know my bf is terrified since I'm 5 months preggo with a little girl, & ours will be born abt the sametime she's getting her surgery. It's just crazy right now.
  • mschopmschop
    @jmask something being wrong with the babies heart is my is my top worry. I can't wait till I'm more along so the can check his little heart. The baby had a heart rate of 183 bpm so its pumping strong at lest
  • ghettobettyghettobetty
    My brotherwas born with this. They check each of my babies throughally I'm praying for u!
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  • Kriss82001Kriss82001
    @ghettobetty & @firsttimemommytobe thank you so much, I'm glad your brothers are healthy! Everyones stories are really helping! :)
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  • 4senough4senough
    My hubby, his brother, our oldest son, my nephew were all born with a hole in the heart. Nephew's was the worst, he ended up with RSV and pneumonia too. He was only a few weeks old when they found it, and was on digoxin and steroids for his first year. He is now a stout, healthy 3 year old that doesn't slow down until he goes to sleep. I hope this story helps your sister. My sis felt really guilty, too, doc said he was hours from death when they took him in.
  • Kriss82001Kriss82001
    @4senough Wow, very similar! They didn't send her home on anything that I know of, which is weird. Thank you for sharing, & we are working on her, but she's really stepped up & realising that no matter what, she took her baby in & saved her daughter, she has no medical training & couldn't have done anything else. I just hope she stays thinking positive.
  • mommyof2inLAmommyof2inLA
    edited April 2011
    I was born with a hole in my heart as well. I will be 30 this year. Mine closed on its own and I lead a very normal life. I have never had any set back from it. Good luck to your family.
  • madmad
    my best friend now 26 had a hole in her heart, when born. she is now healthy and a runner. she does have a pretty big scar but who cares shes here. it is interesting because she wishes her parents would have remembered the doctor's name so she can thank him so that is something to keep in mind
  • ghettobettyghettobetty
    @kriss82001 sorry I didn't go into detail my brother didn't make it but it was because of blood transfusion work mixed up between hospitals and poor doctors and other factors.... I do however have a God brother who did survive and is huge and healthy! :)
  • caitiecakescaitiecakes
    My daughter had a tiny one when she was born it healed before she was 6 months.
  • Kriss82001Kriss82001
    @ghettobetty I'm so sorry I got confused! I feel horrible now!
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