My little guy was born with a coarctation of the aorta, which means that a "flap" that closes after birth, closed on an angle and cut off circulation to the lower half of his extremities. It took 3 days to diagnose him after he was intubated. HE IS FINE now. Scary then and well, the thing is, I panic a lot still. He has to have valve replacement surgery when he gets older because a side effect of this particular defect is a bi-cuspid valve instead of a tri-cuspid valve.
THis is a non-stop child. I get that. He is growing like a weed, which is what scares me. The cardiologist wants to cut our visits back to once a year but I just can't bring myself to allow that. He's allowing it. I trust my cardiologist completely!!! I think he understands where I am coming from with this.
I should tell you that my little man is 4 years old now, in preschool 5 days a week and takes jiu jitsu 2 days a week. He's smart, and he knows it. He's a clown and he knows that too. My husband thinks that I am over cautious and that I should just listen to the doc that he is fine. How can I? Is anyone else in this delimma?
My nefue and my sister both have that and have not had to have the valve replaced yet my nefue is 15 and my sister is 29. They will eventually have to have it replace but for now they are both happy and healthy. Nefue is way active and does everything. My sister worries about him all the time though.
Hello fellow CHD Mom. My son has a complex defect--7 defects in all. He is almost 3 and we go to the cardiologist every 6 months. I remember we went every month between his first 2 surgeries and when we switched to every 6 months, I struggled with it. He will have his 3rd (and hopefully final) surgery next summer (2012) and then we'll probably only see a cardiologist every year. I would say just go with it--take it as a sign that your son is doing great! Also, you can always make an appt if you think something is wrong. Is his oxygen saturation normal? My son's oxygen sat is only around 80, so whenever we're at the pediatrician, I always have her check it. It gives me peace of mind.
I happen to agree with your husband on this one. If your son is doing well and the doctor thinks that an annual "check-up" is enough unless there is a problem, then go with it and enjoy your active little guy!
Remember that if you have concerns or you start to see "something", you can always call for an appointment or go to the ER. Growing is a GOOD sign- not growing on the "curve" is worrisome and frequently indicates a heart condition.
As his mom, do what you feel comfortable with. If the cardiologist is letting you come in more regularly than once a year, do it if that's what you want. Our son has several special needs conditions and I've learned you have to be your child's biggest advocate with healthcare.
My daughter was born with 2 congenital heart defects. She had her latest appointment in February, and her Cardiologist also wanted to schedule her next appointment for 1 year. She has been going every 3-6 months since birth, she is 20 months old now. According to him there is nothing he can do for her between now and another year, she isn't old enough for the surgery she needs (4 years) and she seems to be doing fine and is gaining weight and growing like she should. I couldn't believe he said a year, she is still a baby and is growing everyday, how do I know her heart isn't getting stressed and weaker because of something?
I totally understand what you are feeling and I don't have any wise words to help you be stress and worry free for this next year, but I just wanted to let you know that you are not alone.
My daughter was diagnosed with coarctation of the aorta later in her life & had surgery when she was 3 (she is now 5 1/2). She too has bicuspid valve but it is functioning so they did not need to touch it right now. (so that's always in the back of my mind) I understand where you are & what you are going through as our cardiologist wanted to go from bi-annual visits to annual. My daughter too is active & healthy; however, when she's running around the playground & comes over to me all sweaty & her heart is pounding mine starts to pound a little bit too. I don't think I'll ever get used to the fact that she had to have heart surgery or ever get used to the fact that she will need to be followed for the rest of her life. Sometimes I worry it will re-coarct & it takes me a little while to push away those thoughts.
That said this website/organization was helpful to me in the beginning stages.
http://www.littlehearts.org/
Take care & remember to breathe!
Can you make an appointment to talk to the cardiologist about your concerns? Is there a chance of something suddenly going wrong or are more subtle problems more of a concern? Maybe you would feel better if you had a list of things that "If you see_______ get immediate help and if you see _____make an appointment." At least that way you would know when to panic or just have a significant concern. Maybe you could ask the doctor to schedule visits based on how much he is growing rather than by year?
My kids don't have heart issues but both were in the NICU as newborns and my older one was on a respirator for 10 days after he was born. I do understand feeling scared and helpless as a parent. For me getting a lot of information helped me understand what was happening, likely outcomes and when to worry or not worry. My kids have not needed a lot of follow up but it helped me a lot to know enough to ask intelligent questions and then get them answered by the specialist. I also brought a notebook and wrote down what the doctor said so I didn't get flustered or distracted and forget things.
I can only tell you from my experience, and each is different! My son is three now. He too was born with a bi-cuspid aortic valve. We have recently gone to check ups with our cardiologist once a year. While it can be scary, make sure you know all the signs to look for that something may be wrong. Also, you said you trust your cardiologist. Have you explained you fears to him? What has he said? If after that, you're still nor comfortable, talk with a second cardiologist! Follow your instincts IF you feel their rational!
to panic when your kid has a disability for a lack of better words is normal. i get totally what you are saying and never had to deal with a h eart issue so yours is diffrent than mine but what your husband is trying to tellyou is sometimes we care so much we hurt them more than we help them. like suffocating them afraid they might get a knot on the head or a bruise. I realize this is a whole lot more serious. and when they start improving it is like in our minds but he still cant do that cause of x. it is hard to cut the apron strings with a kid who has no problems even harder with one that does. cut the string a little at a time not all at once. patience and trust mom.let him suprise you when you start cutting the strings a little at a time and you will feel more comfortable cutting them even more.
