Hi everyone, I just joined the group today. I’m somewhat frustrated but now moving in the right direction I believe. I am a nurse and a paramedic so I have some medical background. I have a brother that passed away from ASD in 1973. When I found out I was pregnant last year I made sure I told everyone who would listen about him in order for my son to be evaluated well early and have it ruled out. I was assured he was fine. Fast forward to last week, he’s now 8 months old and caught that nasty virus going around requiring him to be admitted to the hospital. While there they noted a heart murmur and did a cardiac echo, finding the ASD. It’s classified as “medium” at 6mm. We see the cardiologist next week. What are some good things I need to broach with him? I want to make sure I leave with no unanswered questions.
Welcome Zachary’s Mom. My daughter’s ASD (13mm) was found in almost exactly the same way as you son’s when she was a year old. With her, we knew fairly early on they didn’t want to do anything until she was 4 or 5 years old, so that may be your situation too. Sometimes the ASDs close by themselves, so they’ll likely want to see if it does. I’d ask what type of ASD it is, where it is, and whether the rims are even or if one is short. My daughter had one really short rum, which meant she wasn’t a candidate for any of the devices. She had hers closed at 4 via open heart surgery. She’s now 7, and other than a very thin white scar, you’d never know she had an issue. The good news is they found this early and can fix it, so your son’s situation should be much much different than your brother’s. I know that probably doesn’t make you feel better now. Please keep me posted. I was terrified with my daughter but realize now it was such a blessing it was caught early. I’m happy to walk you through the decisions we made or give you any info I have. Hang in there-Stacey
My daughter was diagnosed at 15 months, and had her ASD repaired just after her 3 year old birthday (via catheter and Amplatzer device). You should ask about the position / location of the defect, and what type of closure they recommend (or do they recommend not closing)? There are lots of options, and it really is case-by-case to decide what is right. Someone already mentioned the rims - if the rims are substantial enough you can have device closure, which can be done via catheterization instead of open heart surgery. What age do they recommend closure? Some heart enlargement is expected due to the increased blood flow through the defect - but you should ask if there's anything additional abnormal that they see. Which hospital do they recommend for the procedure? How often will he be monitored prior to the closure? Any additional activity restrictions? Post-repair follow-up plans (i.e. how often and for how long will he be monitored)? Any medications required following the procedure?
Good luck. The initial diagnosis phase is always stressful. Hope everything goes well with your appointments.
Thank you everyone! I have been mass information gathering, reading everything I could find both written and online. Tomorrow is our cardiology appointment so I hope we are ready!
Hi Zachy's Mommy, I'm checking in to see how Zach is doing. I hope that things are moving forward, toward better health for your little one.
Sending my best wishes for health and happiness,
SK
So I took Zachary to the cardiologist in our area. I should have realized from the get go I was making a mistake going to the office that I was. However, I researched, the pediatric cardiologist we were referred to is the best in the area and greater. When I called the office, I was referred to his nurse who was extremely rude from the moment she answered the phone. After talking to his pediatrician he advised me to see the cardiologist's partner (who has his own nurse). Stated he is newer to the practice but is supposed to be good. So we call get everything switched and managed to get in quickly. When we went, the nurse was nice but he was a different bird! lol. He was not reassuring. Basically made me feel like I was silly for being there (keep in mind that I went with my mom and cousin). After leaving the appointment I was very discouraged. I mean honestly I am a nurse and paramedic so I do have medical background. I can look at my little boy and see right now he is doing fine. However, I know what the potential complications are and what can happen in time. Regardless of what I know, my little boy still has a hole in his heart.
So what do I do now? My next thought is I live close to Mott's at U of M (about an hour away). I call there and they get him right in. We were just recently there. They were amazing. Very supportive of Zach, me, and my husband. Completely the opposite of the other visit. The outcome we had is, they are classifying his opening as "medium", thus he does not need surgery right this second, however no one can say for sure it will close on it's own since it is not small. But (the bright side) the echo they did apparently was not the greatest and did not show all aspects of the opening. The cardiologist said they measured the opening based on the velocity of the flow of blood through the opening. He said many times it can be over-estimated, therefore we do have the potential for the hole to be smaller. He told us that he does not perform the surgery until his patients are 4 years old when they are stable as Zachary is. So our plan now is to watch him, regularly have an echo to measure the opening to see if it is closing and hopefully closed by 4. In the event it is not closed, he is a prime candidate for the cardiac cath procedure. The hole is right in the middle of the septum of the atria, does not effect the pulmonary vein or artery. Said it looks as if it has nice edges that should do well with the plate they insert. So all in all, I believe we walked out with a great doctor and appointment. He told us we were welcome to do follow up in our city and my husband and I both simultaneously said "no we will keep coming here".
Hi zachy’s mommy, amazing how a different doctor can make all the difference in the world. Just because you are in the medical field doesn’t guarantee good care. You must be able to communicate your concerns to the doctor and staff. I am so glad you posted for others to see. One can’t express the importance of establishing a good rapport with the baby’s doctor. Glad you had the sense to move on! Keep us informed. Linda Of note, cath surgery usually goes very well. You will probably be more stressed out than your son come surgery time.