can anyone talk to me about newborn echocardiograms?

bumpuser10617306 · December 2014

So I'm very, VERY close to having a baby. Due date is chrsitmas, but I'm hoping it will be a few days before so I can be home with my kiddos for christmas. Anywho, because the baby was "diagnosed" with Ds (blood tests and visable markers but we opted out of the amnio and are operating under the assumption that baby does have Ds) I was getting monthly u/s. I think I posted about how the specialist said that everything looked good, but in reviewing his files with my OB she stated that because there was a small spot on the heart shown in the u/s (not a visable defect, and didn't change in size) that they would want to do an echocardiogram. She said when would depend on the health of the baby.

What can I expect? It kinda caught me off gaurd because he kept saying everything looked good, so I didn't really do any research about the tests they may do.

Thanks!

macchiatto · December 2014

Hm. One of my babies had spots on his heart per u/s (echogenic foci) but they did a fetal echocardiogram rather than waiting till birth. I just had an echocardiogram myself last week as well. It's an ultrasound of the heart so it's non-invasive and goes fairly quickly. I hope it goes well for you and your baby!

brachysira · December 2014

We had them done in the NICU and he didn't have to leave his bed or anything. Just some techs and wires. No pain. The cardiologist reads them later that day or so and sends a big bill.

babylimas · December 2014

My son had a ton. If your son is born with DS it's always some at birth. My son has DS and ToF. They will probably bring a bedside machine and just do it there. It's just an ultrasound. My sons always been very complacent with them. His first was done immediately after birth.

babylimas · December 2014

And just so you're not caught off guard - you will most likely be hit with a whole slew of tests when he is born. They do a bunch of work ups since a number of conditions are very common with DS. It can be overwhelming at first, so don't be alarmed. Anecdotally, it also seems that a good percentage of the children I know were born with some random level off. My son had problems with his hemoglobin and blood sugar. They leveled off and all was peachy.

bumpuser10617306 · December 2014

Thanks for the info guys. Although we've know about baby's Ds since July, and did some reading/internetting its feeling really...real, ya know?

babylimas · December 2014

I completely understand! We had a prenatal diagnosis as well. Have you joined any DS groups? There are some really good Rockin' moms FB groups that put you with other moms of children the same age. You can go to this link to register

https://www.dsdiagnosisnetwork.org

bumpuser10617306 · December 2014

babylimas said:
I completely understand! We had a prenatal diagnosis as well. Have you joined any DS groups? There are some really good Rockin' moms FB groups that put you with other moms of children the same age. You can go to this link to register

https://www.dsdiagnosisnetwork.org

Thanks! I will check this out. I searched for a few, and found an actual support group that is local, but I wasn't ready to commit yet. I think finding a good fb group is probably a smart idea. Its just taking that step into a new world, so to speak. I haven't even told anyone besides my parents & MIL yet. My H told his closest friend, but I've only seen my 2 BFFs for birthdays and other celebrations and it never felt like the time.

babylimas · December 2014

It's very hard to admit before your baby is here. I just ignored everything Down Syndrome before he was born and focused on the heart defect. I refused to look at pictures of children with DS. I struggled some more after he was born, but it was a bit easier to accept. Once you have that baby thats just a normal baby it becomes easier. Yes he has DS, but he's just a baby. While I was pregnant it was so hard to see him as anything but a diagnosis. I know it's overwhelming and scary, but it will get easier!

bumpuser10617306 · December 2014

Thank you. Honestly, at this point I'm more worried about the logistics of 3 kids under 4 than anything down syndrome related, since its just a bunch of posibilities/what ifs at this point. I'm scared that it will hit me all at once, but I'm banking on the fact that I've managed to keep my other kids alive and generally cared for, lol.

jackieweldon · December 2014

Our little one (confirmed Ds dx via amnio and heart defect) had her echo at my bedside. She never left my side for the 48 hours after I had her!

bumpuser10617306 · December 2014

Usm123 said:
We've had over 50 echos between the NICU and follow ups for DS2's CHD. Have you met with pedi cardiology before? MFM scanned me the day before DS2 was born with the cardiologist. The Dr was always present and gave us feedback immediately with all of his scans inpatient.

no I haven't met with any specialists beside the fetal diagnostician who did my monthly Ultrasounds. Possibly because they didn't actually see a visible defect? I should probably call my pedi tomorrow (if I don't go into labor tonight,lol) and touch base with him.

jess9802 · December 2014

DS had an echo at 2 mos. old when the pedi heard a heart murmur during a well baby check. (The murmur has since disappeared, but the echo revealed a bicuspid aortic valve.) Anyway, the echo was a very easy process, even at 2 mos. We sat in the room with him, and he was wrapped in warm blankets while the echo was performed. The echo took over an hour as I recall. It was nerve wracking but pretty easy. And expensive.

I hope all goes well with your labor and delivery, and even though I imagine you have a lot of mixed emotions right now - congratulations on your new baby.

can anyone talk to me about newborn echocardiograms?

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