Heart Defects found...waiting Amnio Results

Speaking as both a pediatric nurse and a parent of a child with multiple heart defects (but otherwise completely healthy! 2 1/2 years old and has been through 2 cardiac catheterizations and numerous tests/visits, but completely normal otherwise!) - I just wanted to give you my recommendation for Children's Memorial Hospital (I see you are in Chicago). They have some of the best cardiac surgeons (should the need arise) and will provide your family with excellent care.

Besides that, I also encourage you not to worry too soon! :) As others have already stated, some issues resolve on their own, others require no more than a follow-up with a pediatric cardiologist. Take it one step at a time, but I would encourage you to make sure that you are delivering at a hospital that also has great care for the baby (ask about the level of their NICU, do they transfer to Children's, do they have NICU specialists or pediatric cardiologists in-house at all hours, etc).

I'll be anxious to hear how things turn out! Don't hesitate to contact me with any questions, etc.

A close friend of mine has a 4 year old son who had a heart defect in utero and she ended up having surgery during the pregnancy. He was born okay but she knew he would need more surgeries once he was here. He ended up having one when he was a newborn and then another one last year. I don't know exactly if he will need any more but I will tell you he is normal and appears very healthy otherwise. He plays with my daughter and his sister, fights like any other boy his age, acts up, you name it. He is normal size for a 4 year old, no external abnormalities and really is a beautiful adorable child. She had him at term and normal delivery etc. I would first see what the level II says and also do not panic because it does put stress on the baby and you want him or her to heal and develop as strong as possible. The calmer the better for him/her. Also, I have two other friends who's kids had heart abnormalities: one had surgery at birth and none since, totally normal, healthy child and is 3 now. The other one I'm not exactly sure what he had and I really never got into it too much with her but he also seems normal. I also have a friend with a girl who's 9 months too and they scared her stiff telling her her daughter had all these abnormalities and heart problems etc. She spent her entire pregnancy coming to terms with a special needs child and was pleasantly surprised when her daughter was born TOTALLY healthy with NO abnormalities at all contrary to all the tests, ultrasounds and amnios that she did. So tests are not always accurate. They are only tests. I remember reading how a lot of times it can happen and it corrects itself as the pregnancy progresses. Remember that all systems are NOT in check until delivery (full term). Although many babies are born before term they still have ALOT of growing to do and are not at their optimum unless they have the full 9 months. Hang in there, wait to hear the results, pray that things will work out, and most of all remember that it is not ultimately in our hands. Hopefully it'll all be just fine.

I don't really have any experience with this, but want you to know that many mother's reading this are praying for you and your baby. God Bless!

My daughter was born with a heart defect. We didn't know about it until after she was born. All babies have a small hole in their heart but most heal before they are born. In our case, the hole is very small and will most likely heal on its own. She had to have an echo, an EKG and a chest Xray when she was only 2 months old. Now she is a healthy and happy little girl. I know how scared and worried you are. Unfortunately, all you can do is wait and see. I wish you the best of luck. Keep us posted on how the amnio turns out.

My daughter was extremely small while I was pregnant, which lead to a level 2 ultrasound. At the level 2, the doctor discovered a heart defect, and two other abnormal measurements. This lead him to believe our daughter had Down Syndrome, despite my young age. He was pretty insistant on an amnio so that we would have the option to abort. We were against the amnio and definitely against abortion, so we spent the next several months seeing heart specialists and havig more level 2 ultrasounds. I was also at my regular O.B. every week. We were so scared that something horrible was wrong with our daughter and she wouldn't make it. Finally at 37 weeks my O.B. insisted on delivery because the baby's heart rate didn't look good. So I had a c-section and she was born weighing 3lbs, but perfectly healthy! She's doing great, no problems. The heart defect resolved itself before delivery. She did have another small heart defect after delivery, but they expect that to also resolve itself.

Hello J.
I work in Labor and Delivery as a nurse and being a high risk hospital we do see these cardiac anomalies. Not knowing exactly what your baby has I would like to tell you that there is much success these days with all the technology and experts to care for our little ones. I just took care of baby M who was born with a major cardiac defect and with prayers, nurses, doctors and the love of her parents she is doing well. I will say a prayer for you and your family as well. Take care
K. S

Hi J.~
I can't really speak about the amnio, however on behalf of the heart defect I can!! I have a 4 year old son, who at 16 days old I found out had a heart problem. He had to have an emergency heart surgery to save his life...LITERALLY!! Had we not caught it that night, he might not have been here with me now! So, I feel that you are lucky to have found this right now while still pregnant. They can help you prepare with so much, so that when your baby is born everything can be taken care of right then and there. Even though he has had 2 surgeries (at 17 days old and at 2 years old) he is a perfectly healthy, active 4 year old boy. You would never know he had a heart defect. Now, I also have an 8 month old daughter too. While I was pregnant with her, I found out at about 8 months, thru a level II ultrasound, that she too had developed the same heart defect as my son. So, at her delivery, my delivery room was pretty much packed-my ob, the nurses, pediatric cardiologist, neonatal doctors and nurses, and PICU attendants (just in case). She is as healthy as can be-no surgeries, no medication, no extra care at all. She has actually out-grown her heart defect.
I guess my whole point is to let you know that even though it was discovered that you new baby will have a heart problem, everything will likely turn out just fine. Just be positive and that's the kind of results you will get in turn. Neither of my children have any other abnormalities. I'm not sure where your pediatric cardiologist is at, but if you'd like another referral, please let me know. Mine is actually rated within the top 10 in the country, she has a few locations, and she can also work out of Children's Memorial Hospital, which is where my son had both of his surgeries. If you'd like her information, or if you want someone to talk with about all of this, please feel free to email me at ____@____.com. I talk with people ALL THE TIME about my experiences.
Good luck & I'm sure everything will be just fine!!
~J.~

J.,

Hi! My son was born with a heart defect - a VSD. Even though I had a fetal echo done while I was pregnant, they could not find it during my pregnancy. When he was 6 weeks old though, the pediatrician heard a murmur and after having an echo done, we found out about the defect. The pediatric cardiologist told us to wait for a year because it could have resolved itself - but it didn't and my son had heart surgery 2 weeks after his first birthday. Everything went great and he is a normal, active, intelligent young almost 4 year old now. I know my case is certainly different from yours, but I just wanted to share my experience with babies born with heart defects. I can imagine what you are going through. I will keep you and your family and the baby in my thoughts. If you have any further questions, please don't hesitate to ask!!!! any time!!!

Good luck to you! Hang in there!!

Aarti.