Please offer chizuk-my newborn diagnosed with VSD

amother

Wed, Oct 24 2012, 11:25 am

I had a baby about two months ago and it seems as if she had a murmur which was completely overlooked by hospital staff and at her two week well visit. We were sent to a pediatric cardiologist who confirmed a diagnosis of VSD-otherwise known as a "hole in the heart". He said the "hole" was 5mm in length which they call moderate. As of now she is gaining weight and has good color although she often stops breathing for a second or two while feeding (seems its a strain for her) and also sweats profusely. He wants us back in four weeks for a followup at which time they will see if it will start to heal itself or if surgery is warranted. I am a total train wreck! Firstly, since she was born I have been telling anyone who wants to listen that her heart always feels like it's racing and they all said that newborns have a fast heartbeat and its normal. The cardiologist said that what I was feeling is actually the murmur which is especially loud. I feel so guilty-not that anything would have been done if we caught it sooner, but how could I not have trusted my gut and gone to check it out? Secondly, I need to hear from other mothers that have gone through such an experience that the odds of it closing on its own are great. I can't fathom having my precious daughter undergo an open heart surgery. She is so tiny and this is causing me such anxiety and anguish-I need chizuk desperately!

pelle

Wed, Oct 24 2012, 11:41 am

so sorry you are going through this. it's very hard finding out something is wrong with your baby.I have not been in your situation but other medical ones with my daughter. you can not beat yourself up about not taking her to the dr. sooner. it's sounds like you would have been told the same info. G-D willing she will have a rafuah sheleimah. take each day as it comes. get a second opinion if it will help calm you down. she needs you to be calm. don't think about open heart surgery yet. H-shem should give you the koach and menuhat nefesh you need. hugs! and enjoy her.

cuties' mom

Wed, Oct 24 2012, 12:36 pm

My 4-year-old was born with vsd. The dr noticed it when I was ready to leave the hospital and made us wait a few hours for the cardiologist. I remember how scared I was when I heard he had a hole in his heart. He had an echo in the hospital, and repeat echos at the cardiologist when he was 1 month and 2 months old. The first office visit, the dr said that its moderate and may or may not need surgery. At the two month visit, the dr said to come back when he's a year because the hole is getting smaller and will probably close by itself. At a year, it was closed.
The hardest part was getting ds to stay still for the echo. I never bothered giving him a pacifier until our first cardiologist visit when he wouldn't stay still. I spent the whole month before the next check-up getting ds used to a paci so when he was almost 2, I had a hard time getting him off it. The only other long term effect is that ds was born Nov 2, 2008. He was discharged on election day and after waiting around at the hospital for so long, and hearing that ds has a hole in his heart and might need surgery, I never made it to the voting booth. Its because of the vsd that Obama won the election. Wink

(Since my vote really makes a difference.)

ElTam

Wed, Oct 24 2012, 2:02 pm

My oldest was born with a condition less serious than your child's. I remember feeling as you describe.

I think what helped me was focusing on the fact that if I wasn't calm, I wasn't going to make good choices, I wasn't going to be a good advocate for my child, asking questions, getting second opinions, being firm about what we wanted, and also understanding what the doctors were saying. I remember walking into the hospital, just shaking and saying, "You have to be the mommy. You have to be the mommy." Over and over. It really helped. My baby needed me not to fall apart, and that gave me strength.

Your baby should have a refuah shleima. Do you want to post the Hebrew name here so people can daven?

the world's best mom

Wed, Oct 24 2012, 2:40 pm

My ds was born with a PDA and a PFO- I think those are different types of holes in the heart. Not sure exactly what the difference is between different types of holes in the heart, but after spending 3 days in the NICU turning blue, he was sent home. The holes closed up on their own.

the world's best mom

Wed, Oct 24 2012, 2:42 pm

cuties' mom wrote:

The only other long term effect is that ds was born Nov 2, 2008. He was discharged on election day and after waiting around at the hospital for so long, and hearing that ds has a hole in his heart and might need surgery, I never made it to the voting booth. Its because of the vsd that Obama won the election. Wink

(Since my vote really makes a difference.)

For sure. So now I know who to blame the country's problems on.

Wed, Oct 24 2012, 2:56 pm

1) You should absolutely NOT feel guilty - the hospital is supposed to give your baby a full physical exam when he was born, and I assume by 2 months you've been to your own pediatrician by now as well. If no one picked up on it, then you should not feel bad about it at all (and it can't be that bad altogether!)

2) Cardiologists - and basically all specialists - like to give parents the worse case scenario. So don't take what he told you so seriously.

3) You were told there is a chance it can close up by itself. Take advantage of that chance, and daven to Hashem to close up that hole. Say asher yatzar with more kavana, especially where it says 'im yipaseiach echod meihem...". It is within teva for this condition to heal itself. Daven to Hashem, because that's where the healing is really from.

4) My son had a different heart condition, which does not heal itself. He did have successful open heart surgery, and while I will say that I hope to never ever go through such a thing again, and that it was indeed very hard for me, we all pulled through. If your son does need surgery, and you want some chizuk from someone who's been there, done that, you can pm me. (That's why I'm not being amother!) I'll be happy to help you out in any way I can.

Refuah Shelaima, and think positively!

amother

Wed, Oct 24 2012, 10:42 pm

First of all, Thank Hashem that you found out now, and not when you were waaay more fragile, like minutes, hours or even days after giving birth!

My ds was diagnosed with a major heart condition when I was in my 5th month.
It was good that I knew before because I was able to deliver in the right hospital and emotionally I was prepared for the worst! (ps. doctors make things sound muuuch worse than it usually is)
BUT, that meant knowing for almost 5 months that I'm carrying a child that will have serious medicall conditions and my having to travel back and forth for frequent checkups when nothing can be done.

So as long as there was nothing that could've be done about it, why beat yourself up that you should have found out earlier? Be happy that you found out when you did!

Also at some point they were discussing doing another surgery cuz he had a bad leaky valve so I asked my non-jewish cardiologist if there is any chance of it getting better on it's own. He answered "for you pple(jewish) anything is possible so keep praying! "
ps
He has since had 2 8hr open heart surgeries and 2 catheterizations (fix it without having to cut open like put in a stent etc).
Whenever I walk in the street with him, everyone comments what a gorgeous boy he is and anyone that knows him comments on how smart he is!
If I do mention anything ever about his condition pple are totally shocked.

so keep praying that it closes on it's own, and in the worst case, if he does need surgery, just know that there are plenty of healthy, normal looking kids on the street that have been through this and do perfectly fine later on in life!
Hatzlocha!

amother

Wed, Oct 24 2012, 10:53 pm

amother wrote:

it does often close up by itself... in my case it did not-- I am a healthy 30 yr old BH who just had her fifth child and I have vsd! I go for checkups and take antibiotics when I go to the dentist, otherwise it BH does not affect me...Hatzlochah!!

Sounds familiar. I am 27, was born with a vsd, and had open heart surgery at about a yr old. B"H I have never had any problems because of it.

PS - My doctor just told me that the guidelines have changed and meds are no longer required at the dentist.

amother

Thu, Oct 25 2012, 2:30 am

My one year old daughter, had a heart condition that was told to me at 25 weeks. I was told that she would 100% need open heart surgery at about 6 months old. Thank G-d, she had the surgery at 6 1/2 months old and her heart is doing well now. The hardest part of the whole thing was getting to the surgery. One, it was always on my mind and two, she had a lot of health complications from it.

First, do not beat yourself up about not discovering sooner. There is nothing they would have done for it sooner. Second, although open heart surgery is not fun, there are very talented surgeons and very good medical care to fix the heart. We were out of the hospital in 5 days, even though we had a few set backs getting out. Third, as everyone said, they often close on their own. Hashem is the true healer.

RachelEve14

Thu, Oct 25 2012, 3:22 am

My baby was born with a critical heart defect we knew nothing about while I was pregnant (TAPVR). BH he was born in a hospital that was equipped to take care of it, and the pediatrician on staff the night he was born knew what it was within 8 hours. I noticed he was a bit blue, but other than that he looked fine and it really could have been missed (G/d forbid).

He had open heart surgery at 5 days old and BH he's recovered and in the words of the cardiologist "a perfectly healthy baby." He will need life long follow up, but b'ezrat Hashem no more surgeries.

VSDs often close on their own. Heart defects big & small happen to 1 in 100 babies. BH you found it and she is being followed by a cardiologist. If you want, you can feel free to PM me.

happy2bmarried

Thu, Oct 25 2012, 7:11 am

My little preemie was found to have a PDA (also a hole in the heart) when he was a few days old in the NICU. He also has something else on one of the valves which none are of the cardiologists are quite sure about, but we know that it is bH not causing any problems.

He has had many echos and follow ups and bH at the last follow up at about 9 months, the PDA was gone and the vegetation on the valve had gone smaller in realtion to the heart (I.e. the heart had grown and that had remained the same) so it seems that we will just need follow up echoes.

A hole can and often does close up on it's own.