My Daughter has a VSD I feel alone

Ola - posted on 04/28/2012

You defiantly are not alone and IT IS NOT YOUR FAULT.. My son was born 2-25-11 and he has 2 unrepaired ASD's and an unrepaired VSD he is scheduled for surgery on 5-21-12, he is 14 months old and weighs 17lbs 8oz and is about 28in tall.. little I know lol... It can be scary but you just have to be strong for her cause she will be strong for you.. One thing about babies is they don't know how to give up... If you want to talk just let me know

Emily - posted on 03/08/2012

Don't blame yourself! These things just happen sometimes and there's nothing you could do differently to prevent it! My boy Reese also has a vsd. The dr. Said it was the size of a nickel. He wasn't diagnosed til he was 8 months old and was scheduled for OHS a week later! Happened so fast! Because he went undiagnosed for so long, he also developed pulmonary hypertension. He was on O2 for 4 months. Scariest time in my life, but God gave me an amazing peace through out it all. His surgery was oct. 28 2005. He Came home 5 days later and recovered so fast! Kids are amazing! He is now a perfectly healthy 7 year old boy. Every year we go out to dinner to celebrate his "heart day". He loves to show his scar and share his story. It may feel like your world is falling apart, but things will get better!

Kristin - posted on 02/14/2012

Hi, my son just had open heart surgery to fix a 8mm VSD. His surgery was October 28th 2011 at University of Michigan. He was only 3.5 months old. He was diagnosed the day after I gave birth. Henry's hole was diagnosed as a large hole. So that will determine if your baby will need to have surgery. Have they told you what size the hole is? Henry was on the same meds until surgery as well as a few months after surgery. He was also on pain meds for a month. He was off all meds two months after surgery. Henry was in the hospital for 4 days. He recovered quickly. Although some children stay in the hospital for about a week. That will be a hard time for you, but remember you have to stay strong for your baby. Before the surgery Henry was so weak he would sleep all the time and he would not even try to go on his tummy. Eating was hard, he could only eat 1oz at a time. More than that he would fight it. So I was constantly feeding him. Now he is almost sitting, crawling and he rolls all over the place. As a mother you will always feel like it is your fault, even once they are healthy. Just know that you could not have done anything. I look at it like I wanted a special child and that's what I got. I would not want to go through that again but I wouldn't have my boy any other way. No matter how much I tell you or your family tells you it will be ok, you will feel lost until she is better. All you can do is have faith in the doctors and your child. This will be the toughest time of her life and momma needs to stay strong through it. Also help tip, since Henry didn't eat much before surgery GERD was never a problem, but after surgery he started to eat 8oz bottles and he had GERD. He was histacricly crying for 3 days when we brought him home and we thought his patch n his heart popped ( i was later informed that that cannot happen), we rushed him to the ER and right away they knew he had GERD. Keep in mind your baby will grow quickly once the problem is fixed.

Amber - posted on 02/13/2012

Hi,

Although my son did not have the same exact thing as your daughter (he had an ASD...well, two holes between the chambers actually) I want you to know you are NOT alone. I know what its like to feel like its your fault and go over every tiny thing that you could have possibly done wrong during pregnancy. Its hard but you need to know that it is not your fault. It is actually more common then most would think. The thing with our babies is we don't know for sure if holes will close on their own or not. My son's didn't... He was 4 months old and had pneumonia when they first heard the murmur. After they did a couple echos they discovered the two holes and his upper left pulmonary vein was not connected to the right side of his heart meaning blood was pumping through the right but not through the left side. He was sweating all the time I felt so bad for him. He gained weight alright by the time he was 1 so they did do the surgery. It is the hardest thing I have ever had to sit through. 3 1/2 hours of torture. He did well though, spent only 6 days in the hospital after open heart surgery and is now a healthy 20 month old. Doctors do amazing things, and babies recover so fast. Just remember that even though you will bear the memories, she won't. She is too little to understand what is going on which is hard but she won't remember any pain if she has to go through surgery. I hope she doesn't have to go through it but you are obviously a great mother and you will fight just like she will. Remember too that you are HER VOICE she cannot tell the doctors anything so if you have ANY concerns or questions SPEAK UP!! That was hard for me at first because I figure they are doctors and they know what they are talking about, but if you don't understand any part of it or don't like the way they are doing things or anything for that matter just say something ... Its very helpful :) Anyways I hope this helps at least a little! I'll keep you guys in my thoughts and prayers.

Hayleyff - posted on 02/12/2012

Well no reply then oh well I will keep talking to myself as it helps belive it or not. So update is my daughter has still not gained weight weighing only 8lb 8oz at 3 months old so they have put her on sma high energy in hope this will help her to gain weight. Consultant check up and next weigh in in 6 days please please let there be some improvement and weight gain