i have a question about congenital heart defects?

Question

my daughter was born with a hypoplastic aortic arch, a coarctation of the aorta and a small hole in her heart....i did not know of her condition until after birth. i had a very normal pregnancy. during ultrasounds i felt like the technician always looked at her heart more than everything else....one time i had to have a repeat ultrasound because they "couldnt get a good look at the heart" ??? doctors have assured me that this was not a problem they could have diagnosed or seen without having a fetal echocardiagram. i never had any special ultrasounds--just the regular one in the drs office. im just wondering if anyone else had this happen? or if there is an ultrasound tech out there that can give me some more info about if i could have known about this before my daughter born. her defects were so bad that when her "PDA" started to close she went into heart failure and shock and she almost didnt make it.

Answer 1

First of all, a fetal echo is not a risky procedure. It's just an ultrasound done by a pediatric cardiologist looking only at the heart. It does expose the fetus to more radiation, which is not the best thing in the world, but I firmly believe that the benefits of prenatal diagnosis outweigh this.

My daughter was diagnosed prenatally with hypoplastic left heart syndrome. After several attempts to look at the heart and being unable to get good pictures of it (which the u/s tech attributed to the position she was lying in) the doctors in my OB practice just happened to pick my case to review and recommended a level II u/s for a second opinion. If they hadn't been going over it more closely I don't know if we would have known about her heart defect prenatally. I consider us lucky that the doctors caught that. That's why I tell everyone I know that if the u/s tech has a problem seeing your baby's heart well, request a level II if they don't suggest it. Heart defects are the most common birth defect, occuring in about 1% of newborns. Most are not as severe as my daughter or yours though.

A baby's heart is tiny, about the size of a walnut when they are born full term, and smaller than that in utero. It can be hard for even a trained u/s technician to see all of its parts. The only reason they caught my daughter's is because one of the ventricles was practically nonexistent, and that's one of the larger structures of the heart. I can't imagine it would be easy to detect a COA/HAA on a regular u/s - those structures are just so small.

My daughter is 20 months old, has had two open heart surgeries, and is doing absolutely fabulous. You would never know anything is wrong with her heart. Positive outcomes are very common.

Anyway, I hope this helps. You are not alone - there are a lot of parents dealing with CHD, many who did not find out about their child's defect until after birth. I know it is very devastating. I hope your daughter is doing well now.

(nurse_kiddy - I replied to the email you sent me but I'm not sure it went through - did you get it? [e-mail])

Answer 2

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Answer 3

my thoughts go out to you. i am in the same situation. my son was born 3wks ago and was diagnosed the next day with hypoplastic left heart syndrome. it is where the left ventrical is underdeveloped so severly that little or no blood can flow to the body. it requires 3 surgerys. he had the 1st when he was 6 days old.
he was only diagnosed because the pediatrician heard a murmur and ordered the proper tests.
my pregnancy was fairly normal. i had cramping early on so i had ultrasounds done. at the 18wk u/s they couldnt get a good look at the heart as he was moving too much. so i had to go back at 24 wks and have one just to look at the heart. and they detected nothing.
ive worked in pediatrics for years befor i got pregnate and quit due to the cramping. all the doctors ive worked for all ask me why it wasnt detected during pregnancy. ive asked the same questions to every different doctor who treated him, and got a different answer everytime. from it may not have stopped growing at that point, it may not have been a good u/s machine, the u/s tech may have been lazy and only counted the chambers and not the size or condition of them. who knows. i feel it should have been caught, but done it done.
my husband was so convinced it should have been detected he went as far as to contact a lawyer. but we talked and feel no good will come from dwelling on the issue, as i think it was his misplased anger over the whole situation. and the helplessness of it all.
my focus now has to be taking care of my son, all the visits to all the doctors, his meds, and preparing for his next surgery in a couple months.
good luck to you. i hope you have a great support system.
if you need to talk you can email me [e-mail]. my thoughts and prays go out to you from one mom to another.

Answer 4

I have a little boy who is 2 1/2. He was born with pulmonary atresia, a major VSD and collateral arteries. I was lucky enough to have this diagnosed during my pregnancy through my ultrasounds. I think that because I had a 1:2 chance of him having Down Syndrome they looked very closely at his heart due to the increased risk of heart problems with that condition. I did have to go in for extra ultrasounds before it was discovered as his heart was hard to get a good look at the way he was lying. I was told at the time that it is very difficult to see the heart problems and that I was lucky because it could have easily been missed. We were then lucky to be able to moniter him following birth, as I did see babies crash like yours which was scary enough without it being my own little one. I really feel for you. My son has so far had a couple of major heart surgeries with more to go as he grows. He is doing really well and the doctors have just been amazing. I wish you and your daughter well.

Answer 5

your doctor was telling you the truth, without a fetal echocardiogram, a very risky procedure, there was no way they could know of the defects. As for looking at the heart with ultrasound, they look for that because it is the most readily identifiable organ in the body, it's a good marker to compare the other organs with, regarding position etc. I am sorry your little one has had such a rough go, but really there was no way to know of the problem before hand, not any safe way to know, and without indication of difficulty in vitro, no reason to do such testing, and you did say you had a normal pregnancy.

Answer 6

needless to say once you talk approximately congenital defects that would comprise not having any heart boost in any respect- definitley deadly. well being care has greater plenty that they are in a position to p.c.. out defects on ultrasound nicely earlier the beginning and get you to a centre that could manage the disease. on occasion they even do a fix in utero. some defects could be deadly in case you had the baby at abode or in a small city, yet fixable in an excellent medical centre. babies may additionally stay to tell the story the surgeries and die of an infection, or yet another difficulty. on occasion young ones choose for a series of surgeries as they boost too. probably ninety 8% of heart defects are treatable now, and that relies upon on early detection so your baby could nicely be born in an ideal putting and taken care of as we talk after beginning.