Fetal echocardiogram, anyone btdt?

[Carpe]

My husband and I are expecting #4. I am already 36 weeks along. I was sent for an ultrasound because I'm measuring big. No surprise there, my littlest so far was well over 8lbs.

 

The surprise, or rather shock, is that I've been scheduled for a fetal echocardiogram. Google tells me these are normally performed before 25 weeks... which terrifies me. Something is so wrong that they need to do this test now (well a week from now) rather than wait until the kid is born. And it's something that was missed in all of the four other ultrasounds I've had this pregnancy.

 

What I was actually told is one of the major veins returning to the heart from the lungs is not attached on the correct side of the heart.

 

I know better than to google these things... Dr Google is the worst everyone is going to die and/or has cancer.

 

Has anyone had to have a fetal echocardiogram? Particularly a late one?

 

I have so many questions. If this confirms what they thought they saw, does that mean the baby needs surgery? Will I have to have a c-section so the baby heart team is ready for him as soon as he's born? Is baby heart surgery even performed on brand new babies or does he have to be bigger? Is google right that he's likely to die before he can even get surgery?

 

I have a full week to wait and I'm pretty sure I'm going to spend it freaking out. I would appreciate anything people have to lessen the freakout. Real experience, reliable websites, positive thoughts, platitudes, anything...

[Guest]

:grouphug:  :grouphug:

 

I'm praying for you and your little one.

 

This sounds like something that can be fixed so that is good news!

 

If you have questions, I would call your ob/gyn and ask them. See if they can move your appt. up.

 

We had a friend who was a newborn/premmie surgeon. He did this thing all the time.

 

DO NOT SEARCH GOOGLE! He is not your friend!

[Jan in SC]

I can't remember if I had that or just an advanced ultrasound with a perinatogist. One of my school was diagnosed with a fetal arrhythmia and level one heart block at 24 weeks, but outgrew it before birth, and other than a couple of routine appointments with a cardiologist, has had no issues.

 

I hope it turns out to be nothing!!!

[Insertcreativenamehere]

Yes, I had them regularly in my last pregnancy. My son had a heart condition that was later easily corrected with surgery.

 

Sent from my MotoG3 using Tapatalk

[ErinE]

:grouphug:  :grouphug:  :grouphug:

 

Bear in mind how small the baby's heart is. Some issues don't show up until the heart is bigger. The fetal echocardiogram helps get a closer look at the heart and blood vessels, before the baby is born. If there is an area of concern, you and your doctors can come up with a plan. 

 

Foremost, as others have said, don't get pulled into medical information overload. Find the best pediatric cardiologist you can, at the best children's hospital you can, with the best NICU, even if you need to travel a bit. These doctors see many cases, and they have the training and skill to help your child. Arm yourself with knowledge, but trust the team.

 

Delivery method will depend on the concern. One case, the problem wasn't discovered until 36 weeks. The original pediatrician said inappropriate things to the parents, based on ignorance and unfamiliarity with the particular condition. The mother switched doctors, even that late in the pregnancy, to a high-risk OB/GYN and found a skilled pediatrician. She was induced and completed labor fine. The baby was observed for a few days (actually close to discharge) when some tests showed a problem and the doctors performed surgery within a week of delivery. The child is now extremely healthy and active, with only a few limitations on movement.

 

Another baby was delivered by c-section, but the mother had undergone a prior c-section and the issue was more severe. The surgeons were able to perform corrective surgery, once the baby had stabilized, and the baby's heart looks great.

 

 

Edited April 28, 2016 by ErinE

[Mom25girls]

Sending hugs, well wishes and in agreement with the advice NOT TO SEARCH GOOGLE. Best advice I've received from my neurologist (and when I "forgot" it...I realized how invaluable it was and I've not done it again).  :grouphug:  and prayers for you  and your little one. I can't wait to see pictures after he's born!!!

[prairiewindmomma]

We've BTDT.  We were able to plan in advance: arrange childcare, stock meals in the freezer, have a NICU team in the delivery room and everything coordinated to go.

 

I've also had the surprise! leave the doctor's office in an ambulance and get shipped an hour away all by yourself experience, and it is far more stressful.

 

Put this week to good use: stock the freezer, put some friends on standby for backup child care, clean and pay the bills, and get your house ready to go to meet baby!  Stay off the internet; make a list of questions for the doctor.  My friends who have had babies who have needed surgery right away have all had good cardiac outcomes, it was just scary and stressful to go through.

 

When picking a hospital: level 4 NICU with a cardiac specialty, preferably next to a Ronald McDonald house.  Note that if your baby needs surgery right away or soon after delivery, keeping the house germ-free is essential.  We had to rearrange life to not go into public places and to limit outside exposure.  So----no family playdates at Chik-fil-a, no showing off the newborn at church, etc. 

 

Best wishes!

[wonderchica]

I would choose to deliver at a hospital with a the best NICU/cardio team I could. Even if it is a drive from home. If you deliver at a hospital where baby can't be cared for, he'll be transferred quickly. I'd prefer to be in the same hospital, particularly if a csection is a possibility.

[ktgrok]

There was an article recently in a local paper about how the biggest factor in choosing a pediatric heart surgeon is how many procedures they do at that hospital. We had some high name doctor here, but they did very few surgeries so the surgical team was not the best, just not enough practice, and the outcomes were not what they should be. You want a big well known hospital that has specialists who do this a lot. 

[prairiewindmomma]

Also, I wanted to reassure you that TAVPR or PAPVR is often not caught during normal pregnancy ultrasounds as it can be hard to visualize. It's actually pretty awesome that you are getting the prep time.

 

One more thing I thought of, you need to contact your pediatrician or family physician that you normally take your kids to and give them a heads up phonemail. You will want to ask how they will handle transition of care. Some family physicians will want you to send this kid to a pediatrician. Others will defer to the cardiac unit at the children's hospital that you will be visiting often post-delivery after discharge from NICU. Coordination of care is a big deal, and if you haven't already had a kid with special medical needs, note that you will be spending a lot more time in a doctor's office, dealing with insurance companies, and visiting pharmacies.  Drive through pharmacies are your friend.

[mamaofgirls]

I have had two, but they were at the normal time 17-20 weeks... They are super easy, not vaginal or anything crazy ;) My is because of family history and the cardio told me that if anything was wrong with the baby they would like to know the extent of it before labor. Labors can be stressful on the baby and if there is a large need of concern I would have to deliver va c-section where there are pediatric cardiologists available.

 

Even though yours is later, you are very blessed to have found it. I would much rather be safe then sorry later... Not all heart conditions need surgery, and if they do not always right away. Even if they do technology is wonderful now and your little one will more then likely live a perfectly long, healthy, enjoyable life without major restrictions. I dont know his/her situation though, just stating from someone who had heart surgery as an infant and again in their mid twenties and expecting another someday.

[mamaofgirls]

There was an article recently in a local paper about how the biggest factor in choosing a pediatric heart surgeon is how many procedures they do at that hospital. We had some high name doctor here, but they did very few surgeries so the surgical team was not the best, just not enough practice, and the outcomes were not what they should be. You want a big well known hospital that has specialists who do this a lot. 

 

Yes, I agree. 1000%. I see a pediatric cardio yearly at Mayo Clinic in Rochester. I would not go anywhere else. Their pediatric cardio surgeon was amazing, message me if you would like the name. I do not have a scar up my chest and I am not on blood thinners making any future pregnancies impossible. A local hospital would have put in a metal valve, called it good and threw me out the door. Mayo is amazing and I would take out a second mortgage to continue with them if we were not blessed with good insurance.

[EmilyGF]

Both of our last two kids (#5 and #6) had to get fetal echocardiograms. 

 

First, bring headphones and an audiobook to the fetal echocardiogram. I've had two or three different people. Sometimes they were techs, sometimes the cardiologist. None had much helpful to say during the ultrasound part and sometimes it took 45+ minutes. The time I had an audiobook was so much better since I didn't spend the whole time trying to read the expression on the doctor's face. For the first I took hubby along. After that, he only came at the end because there wasn't much for him to do besides sit in a dark room.

 

With #5, there were heart problems that were part of a bigger problem. When we met with the high risk neonatologist (I think that is what she was called), she told us her best advice, which was a certain procedure not done at our very high tech hospital, but at another one down the road. So get a high risk neonatologist on your side who can give you good advice. We literally spent hours with her (probably cost our insurance thousands of dollars, though).

 

With #6, she's been flagged, examined three times, and they aren't really sure if anything is wrong but everyone seems uncomfortable saying everything is alright. There were no differences in her birth and we had to remind the hospital that she was flagged for follow up.

 

A lot of cardiologists are electrical engineering types turned MD. They often (but not always) don't have good bedside manners. Be prepared for that. Do read up on how the heart works, though, so you can understand all the lingo. 

 

Emily