Fetal echo, need advice

rph2010

Had a fetal echo today. They think my baby has coarctation of the aorta. Does anyone have experience with this? I'm still kind of processing everything and don't know if I fully understand the medical side of things. They are actually having me deliver at a different hospital now because the baby just became high risk and there is no NICU where I was planning on delivering. Our whole birthing plan suddenly changed and hubby and I are freaking out a bit. Im almost 38 weeks and now I haven't met my new team of doctors, toured the facility yet or set anything up. I literally just called the facility today to make sure I have insurance coverage there. Hope I don't go into labor early because I wouldn't even know exactly where to go! Eek! Has anyone else experienced anything like this? And right before the holidays too...talk about stress...

amwaiau

I don't have any experience with this but you and your LO will be in my thoughts.

AlejandraN2

First of all, take a deep breath. It'll be ok. I'm sorry you're going through this. My daughter (now 2), had coarctation of the aorta (along with a very complicated vascular structure overall). Ours was diagnosed at 20 weeks gestation so even though I'm surprised you were not diagnosed till now, i have heard it happen and sometimes happen after birth as well. I would research the hospital and make sure they have a stellar cardiology team and pediatric cardiac surgery. Your doctor should be able to give you the right referrals but yes act as fast as you can just so you can set up the right appointments. 

In terms of what to expect: if they are pretty confident about the coarctation then you'll have a team of doctors waiting for you to deliver. Depending on how severe the coarctation is, you may or may not be able to hold your baby once its born. I was able to hold my daughter for a little bit. They'll then take the baby and do a chest MRI since that will give them more accurate information about the defect than a fetal echo can. This is non-invasive and without radiation so I would not worry about the MRI itself. Most coarctations can be fixed easily through a procedure called balloon angioplasty that inserts a catheter to the vessel (through the side of the baby's belly) and expands the blood vessel. If this is what ends up happening with your baby, then there will be a recovery period (every baby is different so it can be a week or more), and most likely your baby will be on blood pressure medication for a bit and get regular follow ups (at the beginning probably every 2 weeks, then every month, every 6 months and so on).

In our case, because it was a more complicated vascular abnormality, my daughter had open heart surgery at 2 days old. It was extremely scary I'm not going to lie, but it went very well and she's now a thriving 2 year old. She still gets check ups every 6 months and will probably do so for the rest of her life but it hasn't hindered her activity at all and she's the sweetest, happiest kid I know. 

Good luck and feel free to PM me if you want more information. It'll be ok and I'm sure your baby will be absolutely fine. It's lucky that they diagnosed it before birth because now they can take the appropriate steps and plans to treat it. 

rph2010

Thank you for sharing your story. It sounds terrifying but knowing your daughter is OK gives me hope. I think I'm still kind of in shock as I just learned all of this information this morning. Trying to set up appointments right away but seems like most offices just closed early for the holiday!

AlejandraN2

I know how you feel - i've been there too. But please know that this is one of the most common defects and easily treatable (some adult patients do it as an out-patient procedure and are out within a day). It sounds scary but it'll be ok. 

MerBot

@AlejandraN2 is right on I'm a heart ultrasound tech (cardiac sonographer).

The MRI is great for looking at the aorta, and they'll do an echo as well to verify all the cardiac anatomynand how it all relates with the organs, lungs, etc.

Coarctation by itself is just a narrowing in the main vessel (aorta) after the blood leaves the heart and is pumped to the body. Like she said, that can often be fixed or mostly-fixed quickly by balloon angioplasty - which is a fairly simple procedure.

Often coarctarion is isolated, especially if the regular ultrasounds showed normal heart anatomy and they just caught it now.

I will mention one other thing they will look for after birth associated with coarctation is "bicuspid aortic valve." That's not a big deal in itself usually.

It's when the valve the blood passes through when leaving the heart (aortic valve) has 2 flaps instead of 3. About 1-2% of the general population has a bicuspid aortic valve and many don't know it.

Usually a bicuspid valve is fine for decades. Many eventually will need surgery because they are more prone than the regular ones to narrowing/leaking over time. But lots of tricuspid (regular) valves end up narrowing/leaking over time too.

Some bicuspid valves will also be a little narrowed from the start and right away need to be opened a little, or a bit leaky and need a repair or stitch, or both.

MerBot

Also it's not always, but often; something that may not require immediate attention. Many pediatric patients if it isn't causing any immediate issues and isn't a severe restriction they take a "wait and see" approach as long as all is well.

And sometimes they don't catch coarctation till an otherwise healthy young adult comes in with unexplained high blood pressure... (The aorta is about the size of a garden hose.. So blood through a narrowed vessel = higher speed/pressures - like a garden hose with a pinch in it).

Then they fix them in young adults later in life.

So by itself, if this is isolated or isolated with bicuspid aortic valve (BAV) the severity can greatly vary.

It could be a "treat right after birth" thing and they could find more problems.

Or it could be a "wait and see what happens, then treat later if necessary/ appropriate" situation.

I'm sorry there's so many unknowns, and I don't want to falsely say everything is definitely OK -- but this is very often an isolated thing that many people have with only minor treatment or monitoring necessary.

cdv2015

My daughter, also two, was diagnosed around 20 weeks and this was one of her heart defects. She had open heart surgery at 13 days old to correct it, then an angioplasty at 5 months old. She has several other defects that must be monitored, but her aorta looks awesome since her balloon.

Prayers for you both!

rph2010

Thank you all so much for sharing. The more I learn what to expect, the more I feel I can mentally prepare myself. Thanks again