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Mindy and Laura
Hi Girls,
I had my appt with the pediatric cardiologist and the news was so-so. The baby has a ventricular septal defect (a hole in between the ventricles), however she thinks it is mod-small and will probably close on its own. At most the baby would need medications, but prob not surgery. She doesn't want to do anything, even see me again, until the baby is born and then she would see him the 1st week of life to do an echocardiogram. I saw Dr. Sadr at Dartmouth Hitchock in Manchester (she is from Childrens Hospital Dartmouth). I can continue with my OB and deliver at SNHMC, the baby shouldn't need to go to the NICU or anything like that.
The reason I paged the two of you is b/c Mindy you know about these things and Laura you went through all of the testing and surgery with your babies.
Should I schedule a second opinion with the Ped Cards at Children's in Boston? I was looking into their program and it is world renowned, they have 50 pediatric cardiologists, comparded to Dartmouth's five. It's less about the diagnosis and more about the plan that is in place. Also if there is a problem that needs to be treated wouldn't I want my child to go to the best place possible? I just don't know if I can handle anymore of these tests or bad news.
I don't want my 1 month old to have to take heart medication. I don't want him to have any restrictions in life b/c of a heart problem. It just doesn't seem fair. And is my life going to turn into a blur of dr's appts when the baby comes?
Any insight or advice you guys can offer I would really appreciate it. I'm a little shaken up right now.
Thanks
Mellissa
Re: Mindy and Laura
Butting in::::
Maya also saw Dr.Sadr when she was diagnosed with pulmonary valve stenosis. Her case was thankfully not serious at all, and was never detected in-utero. In your case, since you know before delivery that there is a cardiology issue, I would most certainly get a second opinion on what the right plan of action is after birth. Where are you delivering?
:::also butting in:::
I just wanted to say that I would be shaken up too, but it sounds like Baby Conti will be in very good hands. ?I will continue to pray for him, you & Drew. ?Hang in there, Mellissa. ?I am here for you if you need anything, just like you were there for me a few weeks ago. ?The things you said to me in that email helped more than you can ever know!!! (((big hugs)))
PS- You might want to try emailing Mindy & Laura. ?I don't think they're on this board much anymore. ?Just didn't want you to think they were ignoring you....
I'm sorry that you got so-so news Mellissa. I know how difficult this entire pg has been for you. I have no doubt that you are in good hands w/ Dr Sadr & that if she thought you need more/further care she would have insisted upon it. She did my first fetal echo & came in & told us that Owen could go into congestive heart failure at any time & if that happened he would probably not survive. We had to go to Lebanon immediately to see a specialist, start 24/7 monitoring etc. For the rest of my pg I had bi-weekly echos & cardio appts, 3x/week NSTs to monitor heart rate, multi u/s etc. We asked during the pg about seeking a 2nd opinion at Children's & were told that we were free to do so, but would probably get the same opinion & plan (b/c they all work together). Therefore, we chose not to do so. I did decide to deliver in Lebanon b/c if there were any issues Owen would be sent there & I didn't want to be seperated from him (they don't do hearts at the NICU at Elliot). He had all the needed tests & observations & was able to go home after 3 days.
He has since received additional Dx & we have sought a 2nd opinion at Children's. We are currently seeing cardios at both DHMC & CH. Honestly, their opinions & game plans are pretty similar. One time one seems more aggressive, the next time the other. I'm sure at some point insurance will no longer let us play this game & we will have to just see one Dr. But, until then we will see 2.
Despite 3 heart problems, we have been told time & time again that O will not have any restrictions as he grows up. We will be more aware of subtle things that could signal problems (we keep the congestive heart failure in infants list posted) & he will always at least annual cardio visits, but he should not be restricted in anyway. He currently doesn't require any meds & surgery is hopefully at least a few years off.
Let me know if you have any other questions. As Jeanette said, I am not much anymore, but I try to check in every few days. Or, feel free to e-mail me. melindaperrotta at yahoo dot com. Thinking of you & Baby C!
I don't know anything about Cardiology really, but I do know about Children's Hospital and if I'm being 100% HONEST, I would go there if it were me and get a second opinion. At the very least, I urge you to call somebody there who knows something, explain your situation, and see what they advise you.
Why not? Like you said, it'sthe top pediatric cardiology program in the COUNTRY for kids and we live about an hour away from it. That's not to say that more local doctors might or might not be adequate for what your child is going to face, but it's an added level of comfort that you'll be able to have (as I do), knowing that you are in the best place that you possibly could be.
The only thing that I can think of to relate this to with my kids and their condition is to tell you that there were other options and roads we could have taken with them other than going through Childrens. Namely, there are the Shriner's who would have done all of Jakob and Caroline's operations completely free of charge. So, I had the decision of going with free care that probably would have been ok or going to the best doctors that there are ANYWHERE for cleft lip and palate. Even if it meant putting us in the poor house, the decision was a no-brainer for me.
They have a thing at Children's called the "Advanced Fetal Care Center". I dealt with them through both of my pregnancies and I think they'd be the right people for you to call now to get their opinion of where to go from here. They will know, I have no doubt!
www.childrenshospital.org/afcc
1-866-FETALCARE
Please let me know how you make out!
ALSO-
Anyone can page me here anytime they like and I will respond as soon as I see the message. I am checking this board daily, at least, as I have been for over 4 years. Don't let anybody lead you to believe otherwise.
Laura, I just knew Mellissa was upset and worried and wanted to talk to the both of you- her message had such a sense of urgency, ?and I haven't seen you posting much, so I didn't want her to think you guys weren't responding. ?I didn't tell anyone not to page you, I simply offered a suggestion to email you, in case she wanted a response right away. ?Good grief.