Newly Diagnosed

Sharon - posted on 06/21/2010

Thank you all for the advice!!
I'm already doing so much better. My mother is really high strung and is also a nurse, and she just got me really freaked out. I'm taking all your advice and have begun to tell some friends, who didn't seem alarmed BTW. It seems everyone knows someone who has a child with a heart defect and is doing amazing! I feel much better, but I do cary antibacterial gel and make everyone use it!!!!

Amanda - posted on 06/19/2010

I have gne through your exact thing. And my son has Aortic Stenosis and so far my son's has not goten worse so we just keep an eye on it. We found at 6months and he is now 3 1/2. It actually improved at the last visit. I never cut myself off from the world. I just went on like he is normal and only get protective when my gut kicks in.

Joni - posted on 06/18/2010

every parent (heart parent or not ) is a germaphobe. carry some ger-x with you in the diaper bag and when someone askes if they can hold him just say yes and hand the bottle to them first. most people won't even think twice about putting some on. Two, our daughter has a murmur from a VSD as well as another defect (TGA) that has been corrected. She is 14 months old and I think about it daily. It really does get easier and the worries fade. It will probably never go away, but it does get better. We are in the waiting game right now to see if a new medicine will help because her heart function is a little low. You would never know it. It is AMAZING what kids can handle and what they can overcome. I have seen it! Just a thought. This group is great, but having family and friends there to support you would probably be better. They might surprise you in how they handle it. Whatever works for you. Just remember that when you see him doing all of his little "baby firsts" you are not even going to be thinking about CHD, you will be thinking "oh my god come look at my baby!!!" Keep your head up

Mirrhya - posted on 06/16/2010

I think the advice of the others is great but I just want to add this. Do NOT isolate yourself completely from the world. I did that for the first 6 months of my sons life and I got very depressed and very very anxious. My advice is to find a few other moms (of heart babies or not, I personally find it helpful to hang out with moms of heart healthy kids as it lets me know that they have a lot of the same concerns I do.) and form a weekly play group or something. That way you can explain the situation and anyone whose child is sick can stay away. I met my moms group at the local Baby Talk put on by public health, and they have been an amazing support. Also keep in mind that our kids have nothing wrong with their immune systems and they can fight off germs just like you and me. I am not saying to put your baby at risk but make sure you take care of you too, or you won't be able to take care of him. Good luck. My son has only half a heart and is doing brilliantly I'm sure your baby will do great to.

Natalia - posted on 06/16/2010

My daughter was diagnosed with a murmer at birth. We went to a cardiologist and found out that she had multiple heart defects. She goes in for surgery in two months and I'm the same way. When she was younger, around your baby's age, I wouldn't let anyone come near her and even now, I'm very careful about who comes over, who plays with her-I think we're all like that from time to time, just because of that overwhelming fear of something going wrong.
Don't become a hermit, because it's not fair to either one of you, just bring hand sanitizer, if someone seems sick, just tell the truth, you don't want your baby to catch an illness. Most people are understanding. As for your friends, tell them, you need an outlet.

Sheila - posted on 06/16/2010

When I read this I thought it was me writing. When our daughter was 5weeks old, like you, at a routine doctors appointment the paediatrician noticed a heart murmur. And again like you, I wasn't too concerned as several people have heart murmurs but when the dr then sent us to a cardiologist the same day I thought there was more to it, and there was. The cardiologist diagnosed her with AVSD ( a whole in the middle of her heart) and we were immediately sent to Sick Kids because she was in heart failure. We spent a week at Sickkids getting her strong enough to come home and preparation for the surgeries she would need to fix the problem. I know totally what you mean about wanting to hide in your house with your baby and just shut off from the world. I felt the same way...like this crazy roller coaster ride that was going so fast and you just can't stop it to get off or even slow it down. And it sucks, that's the politest way of putting it. I avoided the internet searches because I wasn't sure honestly how much I could handle and also because it's hard sometimes to really tell what is a reliable source and even if it is, is it current. The staff at Toronto's SickKids have been wonderful, is that where you are? Although I will admit when they say things "look good let's just wait and see how it goes" it isn't that comforting,,,somewhat an uneasy feeling but just breath. I found it easier to talk to strangers because you could detach more. All I can say is for us it's been a long road, our daughter is now 5 and has had 3 open heart surgeries and 6 cardiac catheters and is doing really well. We have another cath coming in December but we're getting there. There have been a lot of ups and downs but we're getting there. The best advice I have is to just keep moving, you will get through it. I know with our daughter we couldn't let her get sick because we never really knew when they were going to call us for surgery and if she did get sick it made it harder on her so we spent a good 4 years basically avoiding any place where she may pick up something. There was no daycare or play groups and family functions or anything were under the understanding from everyone that you must be healthy! Our friends and family for the most part were all really good and understood. The one thing we did a lot of were trips to the zoo...it's outside and not a lot of contact with other people even though there are lots of them there we felt it was something special for her with little risk.
Have faith, ask for help if you need it, ask lots of questions if you have them, and don't ever be afraid to keep asking if you think something doesn't make sense. I know I worried that the doctors.nurses, everyone would think i was being narotic but you are the only one that can talk for your child. Be an advocate for him. TRUST YOUR GUT! If you think something is changing or different with your son follow that instinct and keep going until you are comfortable with it.
I don't know if any of this helps but you know where to find me if you have any questions or just want someone that's been there to talk to. You will make it, it's amazing the strength you find in yourself when your child needs you. He will be fine!!