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High-Risk Pregnancy
VSD and Aortic Stenosis
Hi. We found out at our 18 week ultrasound that there was a problem with our son's heart. Since then we have gotten what seems to be the best news possible in our circumstances...After many tests... there are no genetic causes. He will have just one surgery (hopefully) after he is born to fix two holes in his heart and widen the aorta. From everything we have been told the surgery will be 2-3 days after he is born. We are sheduled for c-section in 7 days because of previous c-sections... I have had half the pregnancy to prepare for the upcoming events, we have a great pediatric cardiologist and a superhero surgen... but I am very nervous and scared. This is my third baby and the other two were easy breezy... both only breastfed for first 6 months... I just can't wait to get through this and bring my baby home. Anybody else have experience with open heart surgery... etc.
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Re: VSD and Aortic Stenosis
DD2 had several heart issues, the biggest (for her) being a very large VSD that was unable to close b/c of her heterotaxy (all told, heart-wise she had/has: 2 left atrium [instead of a left & right], ASD- closed, VSD -closed with OHS @9.5mo, interrupted IVC w/azygos continuation, slight pulmonary valve stenosis, slight mitral valve stenosis, trivial tricuspid regurgitation).
We knew about her issues before birth, she had her first "outside" echo when she was about 3 hours old. She was closely monitored and when the time came, we were ready for OHS. She was in & out in 4 days, and pretty much her typical self within 2 days of surgery.
Are they planning surgery right away?
They really can't determine the severity of the AS or the size of the VSD until he's on the outside, and even then, those are things that you could/would typically watch until there's a problem -- the AS won't "fix" itself, but the VSD very well might -- most VSDs close on their own by the time a child is 3.
Where are you delivering/having the surgery done?
Have you talked with the cardi & surgeon that'll be following his case/doing his studies?
there's a heart board over on babycenter that's a great resource as well.
Thank you for responding... when you say your daughter was in and out in four days, is that from the open heart surgery... right after birth or?
There are two VSD's, one is large and very close to the aorta, so when they fix/widen the aorta they plan on closing that hole... I am delivering at South Miami Hospital, they will take him almost immediately to Miami Childrens Hospital, where they will make a final plan. We have been monitored once a month by our pediatric cardi and met with the surgen... both have been very reasurring but it is still scary. Their plan now is to do the surgery 3-4 days after birth... they say he will be in the hospital about 2 weeks...
What was your experience directly after her birth like... did you get to hold her, nurse her... if you breastfed, did they facilitate that or try to give formula, or feeding tube...??? I bet these sound like dumb questions in the life or death scheme of things but they keep me up at night...
The VSD alone shouldnt cause problems with your bonding time right after delivery but with the AS, they will need to assess how symptomatic your peanut is. If it is severe enough he may have more trouble perfusing his body without the help of a med called prostins. Like someone else posted, they should do an ECHO on him very soon after birth to determine how severe the AS is. They may not let you feed him until they figure that out because if he isn't getting enough blood to his body, it can compromise how much oxygen is reaching his intestines and stomach to process any food. That can cause other problems. I have seen them feed kids prior to surgery once they determine their stability and I have seen them withhold feeds until surgery is over. Just depends on your baby. After delivery they will most likely put an IV in him and give him fluids for the transfer to keep him hydrated and sugar levels up, they rarely drop a feeding tube until he is settled in at the other hospital. You should be able to hold him and maybe put him to your chest if he comes out crying and looking ok. If he doesn't come out too vigorous, the nurses will need to assess him first. Talk all your wishes out with your labor nurse the day you deliver and let her know what you are thinking. She should facilitate bonding in whatever way she can and for sure let you have time with him before he is transfered unless he is unstable. No questions or concerns you have are dumb, they are your maternal instincts and should be talked about. Good luck with everything!
Thank you.
Your questions are NOT silly, they're big questions and honest fears - I had the same ones. I also had to know if I'd get to be with her for tests, could bring her into the OR & be there when she went to sleep (I could not for her 1st surgery & honestly, it still bothers me over a year later, but I could for OHS which, for me, was a wonderful experience - not everyone feels the same though), and my biggest was if her sister would get to see/meet her.
I understand there's a plan in place and that is reassuring, but really it should only be a tentative plan until he's on the outside. Your body works very differently when it's on the outside which is why all echos should be repeated & only then should you be trying to finalize surgical plans. Is there a NICU where you're delivering? How close is the hospital that you're planning transfer to? Once he's transferred, since you're having the c/s, you really won't have the chance to spend time together unless you can convince your dr to release you very quickly after major abdominal surgery. If the plan is to wait 3-4days for surgery & he's stable, is it possible for him to stay in the NICU where you are, have his testing done, and then transfer before surgery? It'll give you that time to bond and for him to be fully assessed, while in a unit that should be capable of caring for him.
Is this your first c/s? I had a c/s w/ N (my first section), and I saw her for a few minutes before she went to the NICU (which was upstairs in the hospital I delivered in) while I was in the OR, I wasn't able to go to her until I could walk which was about 2.5hrs later - my husband was able to go up about an hour after she was born (mostly his choice, they asked that he wait until she was up & had her vitals done & iv placed, but he waited a bit longer until I was out of the OR & settled before heading up).
N was in the NICU for 10 days total. She *could* have been released after the first day, but she stayed while awaiting surgery for her bowel (which didn't happen until she was 5w old b/c her cardi was not comfortable sending her under w/her pulmonary pressures so high). We turned the NICU into our home away from home when we visited (after I was released) - our oldest (23mo at the time) colored & danced around in her pod, we ate in the family room and napped on recliners by Ns bedside.
feeding - I formula feed, but could not feed her until the next day b/c she needed to have tests run to check the extent of her heterotaxy (mainly if she had an intestinal malrotation - she did - and how severe it was). Once she was cleared for oral feeds, I gave her a bottle -- before that, she did have an iv that she got some fluids in.
With OHS, you're typically told up to 2weeks for recovery in the hospital. I was told up to 2w for N's and she had surgery on Wednesday the 14th (I left her in the OR at 8:40ish) and we were home by 4:30pm on Sunday the 18th. It's all about how well they bounce back/react to meds/if they were in heart failure before so there's really no way to say 'oh it'll only be a couple days' or 'yeah, it'll be at least the full 2weeks'.
Is your surgeon a cardiothorasic surgeon or a general surgeon? If N had heart surgery where she was born, it would have been done by a general surgeon, which, imho, was not something I wanted - I'd have had her transported immediately up to Boston. I'm barely an hour away from CHB - which is one of the top childrens hospitals for cardiac surgery in the world (and she did have her OHS there).
I mentioned her 1st surgery, so just to give you an idea of recovery times, I'll mention it again. She had a Ladd's procedure (for her bowel) at 5w old. She was in the hospital for 5days then. She did not bounce back quickly and had a lot of pain (a big part of that was that her epidural didn't work) which caused her to need a lot of morphine (and tylenol) which resulted in her body not "waking up" as quickly as we'd have liked after surgery. She spent 3days in the PICU, 1 day in a step down unit & 1 day on the general floor.
In contrast after her OHS (mind you she was 9.5mo when OHS happened, so a lot more active & busy), she was in the CICU for a day & then the general floor for 3. The day she went to the floor I tried to skype with my parents & oldest - N climbed over me, the arm of the chair & the computer to get to her sister -- she still had her chest tube in place. Scared the ever loving crap out of me!
sounds like you're in good hands and have a solid plan in place.
Good luck & enjoy your little boy!!!
My son has Aortic Stenosis as well, and was caught at birth. The pediatric cardiologist that we were assigned wanted to do an angio as soon as possible as he said that it was a moderate to severe one. Thankfully, we decided to get a second opinion at C.S. Motts Children's Hospital in Ann Arbor, Michigan where we lived at the time. There, they said that it was a mild to moderate form of it, and just want to monitor it. He however may need an angio when he gets older, but at the age that it was found, they preferred to just watch it. Currently, you wouldn't be able to tell that he has any heart issues at four years of age.
Now with DD on her way, she has had a fetal echo and will have an echo shortly after birth. According to the pediatric cardiologist through Denver Children's Hospital, it is not able to completely diagnosable for Aortic Stenosis until after she is born. All they could say is that there is a possibility of one. The reason being of that, is because of the layers of flesh that it takes to go through during the fetal echo.
Also, depending on the VSD, which DD does have, and had been verified with the fetal echo, it depends on the size, and as long as it is low and not up towards the valves, they are not as worried and should clear up on it's own and if not, should not be of immediate concern, but would eventually be taken care of. The main concern that they have currently is to make sure that the one valve that they have in utero is to close up for normal heart function outside of the womb shortly after birth.
Good luck, and I would suggest to do further research and look to second opinions to verify. Look at the best hospitals that have an above ranking in pediatric cardiology and at where the cardiologist did their training. Ours did theirs in Boston where the top pediatric cardiologists have been coming out of.