Narrow Artery & Heart Murmur

[Lisa C]

My 8 week old DS has just had an ultrasound and been diagnosed with both a heart murmur and a narrowing of the main artery that takes blood to the rest of his body. Because of the narrowing, he doesn't have a very strong pulse in his legs/feet. I don't get to see the Paed until Wednesday to discuss the results of the ultrasound and so am wondering if anyone else has any knowledge about the ramifications of the narrow artery??

When the pead referred us for the ultrasound it was mainly to determine the size of the hole in his heart, but he said he had some suspicions about the narrow artery - but at the time, i really couldn't cope with the idea of two things being wrong, so didn't ask too many questions/take a lot of what he said in. I remember something about the possibility of inserting a catheter and blowing up a balloon to enlarge the artery - otherwise it would need an operation ..... but my question is, how/where is the catheter inserted?? How can they mess with the main artery from the heart without it being an actual operation????

If anyone has been thru this i would really appreciate any advice/information you can offer.

Also the hole in his heart is 3mm. Is this considered big??? Could it still fix itself?? (The radiographers really don't like to give too much away, do they!!)

Thanks

[GIZMOE]

Hi

I can't offer you any information but my brother has a whole in the main valve. He will eventually need surgery when he is about 40 to replace it but other then that he leads a normal life with no medication. This probably doesnt help at all though.

I hope everything works out for your son. BTW love your aviator he is so cute!!

:hugs:
Amy

[DIANNEKB]

Hi Lisa,

When my bubs was born he had a heart murmer which they thought was innocent but we went and had an x-ray picked up nothing then we were referred to the cardiology department of princess margaret hospital where an echo was done to see what they could find and he was found to have whats called tetralogy of fallot, which is 4 defects to the heart. This is somthing that is not genetic (they actually dont know why and how) it happens when the heart is forming and the tissue just turns the wrong way about week 7 in the womb ... it then creates a hole in the heart and the tissue (that should have been where the hole is) now covers the artery which in turn partially blocks the artery and narrows them. My son has to have corrective surgery as the problem will not fix itself he will undergo open heart surgery sometime within the next few months, he is actually going in on the 3rd July to have cardiac catherterisation done... they actually go up one of the veins to the heart and it's done from the groin area.

Did your bubs have an echo done by a cardiologist??? If you would like to talk please feel free to PM me as I feel I am a wealth of information on this stuff now... I know it's hard not to worry but try not to... Can you get an earlier appointment with your pead???

Di.xx

[Lisa C]

Thanks Amy for the well wishes.

And Dianne, i've PMd you.

[Ky]

I think that they go in through an artery in the groin ... not sure, but I'm pretty sure that is somwhere quite a long way from the heart.

[DIANNEKB]

Hey Lisa, I have sent you a PM back..

[Billy]

Hi lisa,
I can't help on the artery but I can let you know that I have had a 3mm hole in my heart since birth with no adverse effects whatsoever, and 3mm is not considered big. Also most do fix themselves, but if not don't worry- I'm fine!! :D
:hugs: to you, hope this helps
Belinda xo

[Lunar]

I don't know much about the narrowing only what my Emily was born with. She was born with 3 heart defects, the first is what every baby has, a small hole that is supposed to close as soon as they are born, hers didn't,
Second was an ASD and thirdly was an LPA branch stenosis. They all resolved themselves by the time she was 2 so she didn't need any surgery.
I just want to give you a big :hugs: and I hope everything in the future is well and when it comes time for his operation all goes well.
Be sure to let us know how it goes at the paeds.

[Lisa C]

Thanks for all your hugs and support!

Billy - thank you so much for that .... it is a relief to know that the hole might be able to be left. And Emysmum - wow, how stressful to have 3 different problems. But it is promising to know that they have resolved themselves without surgery. I can only hope that we will be that lucky; but i must admit, i'm kind of resigning myself to think that we will have to face surgery - if it turns out that we don't, then excellent, but at least if i prepare myself for that, i will be better able to deal at the time IYKWIM.

Well, only a few more hours to get thru until our 2.30pm appt. My mum is coming with my DH and i - the poor pead is going to be innundated with questions. I think the more brains there the better, cos i know that last week i was kind of in shock and didn't ask hardly any questions, so with mum and DH there, hopefully between the 3 of us we will get all the info we need. - i just hope that we do get some answers today, and don't have to wait until we see the child cardiologist!! Promise to keep you all informed.

thanks again for the support and advice/info.

Lisa
xx

[Billy]

Best of luck to you and your family at your app. today Lisa...
Let us know how you go :hugs:
Belinda xo

[Kells]

Hi Lisa - I hope all went well at your appt yesterday.

Please know that there is light at the end of the tunnel in these things...My DS was born with Pulmonary Stenosis, which basically means the blood wasn't travelling to his lungs to be oxygenated for the rest of his body. Sounds similar to what your DS has.

Let me reassure you that I now have a healthy, happy 5 year old sitting in the next room :thumbsup:

My DS was diagnosed the day after birth, and he also had the ballooning of the valve done at 2 days old. However, this didn't work to enlarge the artery and he needed to have surgery at 6 days old. (oh, and yes, they go up through the groin for the catheter and it is only a dot of a scar). His surgery at 6 days did consist of opening him up and performing on the heart to insert a shunt, to allow the blood to flow through, thus enabling his blood to get oxygen.

It is a horrible situation to be in and most upsetting to see your little baby in that situation, so I wont pretend that it's not. But as the doc told me, he had a 2% chance of something going 'wrong' in the surgery, or a 100% chance of not surviving if we didnt do anything - hence to say it was an easy decision.

My DS has had 5 op's all up, all done before he was 3 - but there was only the initial 'opening up', after that it was all done by catheter through the groin. (They have now blocked up the shunt and his heart is functioning as normal :smiliedance: )

He does have a scar from neck to navel, but honestly I'm so used to it it's not an issue for either of us at all, so dont worry about that. The doctors will refer to it as his 'zipper'!!! :D

I really hope you don't have to go through the surgery, but if you do, I just wanted to let you know that it does turn out ok. Sorry, I have raved on about me now!! What a thread hog!! :laughing:

Feel free to PM me if you want to chat about any of it. I know exactly how you feel right now.

Kellie

[Lisa C]

Ok - sorry to leave you all hanging in suspense, but basically a lot has happened, and i haven't had access to a computer since Wednesday night!

Basically at our appt on wednesday the pead told us that Rohan definitely needed either the operation or balloon angioplasty to correct the narrow aorta. He sent us straight up to the local hospital to get Rohan's blood pressure tested in his upper body and his lower body so that he could give that info to the Womens and Childrens Hospital in adelaide when he referred us to the pead cardiologist there. Just before 5pm that afternoon we got the call from the W&C hospital in Adelaide and they said we had an appt on 1pm on Friday, so we then had to pack and get organised to drive the 4-5 hours over to adelaide on Thursday.

At our appt on the Friday we were told that Rohan has 2 holes in his heart, in addition to the narrow artery (coarctation of the aeorta) and also has a faulty heart valve!

We were also told that Rohan has to have the full operation to cut out the narrow section of artery, and it has to be done in the next 3 months. The cardiologist has assured us that the 2 holes should fix themselves in time, but it is the narrow artery and faulty valve that are the problems. Luckily once Rohan's had the surgery the narrow artery should be completely fixed, but the faulty valve cannot be fixed, and will mean that he will be at a higher risk of contracting blood infections and will need to take precautionary antibiotics prior to going to the dentist or in other situations where he might be at risk of getting an infection.

In the long term, he should be fine and lead a long healthy life, so long as he takes the antibiotics when he's meant to.

So now we have to wait until the surgeons at the Melbourne Children's Hospital contact us with the date of the operation. I'm not even sure exactly which hospital it is performed at .... i'm not terribly familiar with melbourne - i've only been there twice as an adult, and probably 3 times on family holidays....

Anyway, so that is where we are at. All our worst fears have been realised, so now we just have to keep putting one foot in front of the other and pray that everything goes smoothly when the time comes.

I know i will be a mess .... the cardiologist described the operation - they will cut him down his side to get to his heart/aeorta that way, and when he is in recovery he will have a tube in his side to drain the wound and will be on morphine and completely knocked out for at least 24 hours ... he will have the breathing tube down his throat and they will feed him expressed milk through his nose ..... it is going to be absolutely horrendous.

Thanks Kells, for your story - it does help - just knowing that others go through these sorts of things and come out the other side. - Out of curiosity where was your DS's surgery performed? While Rohan's surgery isn't a matter of "life or death" as yours was, it has to be done before he is 6 months or else there will be permanent damage to his heart because it currently has to work so hard to pump the blood.

Anyway, i will keep you all posted as developments arise.

Thanks for all your support.

We only just got back from Adelaide this evening, so i'm knackered and heading for bed!!

L
xx

[CarolineF]

Lisa C - Good Luck with this.

My dd was born with a severe heart murmur and was diagnosed at 3 days old with a pulmonary valve stenosis.

It was scary. but the hospital were great and explained everything.

She had a balloon valvuloplasty at 28 days old when they went in through the groin with a catheter. she has had regular check ups ever since and is doing well. She is now 6 and runs around like a maniac.

She has to have profilactic antibiotic cover should she go the the dentist etc to prevent endocarditis which can be fatal, but that is a small price to pay. She also has a certain amount of regurgitation throught the valve because it has been stretched, but again it is expected with that type of surgery.

I wish you the best and will be thinking of you.:hugs:

[ShanMac]

Hi Lisa


This can be a very hard time, most of us don't even contemplate that there might be something wrong or that you'll end up in ICN or SCN .... it's a world you never know about until you there and then it's like wooow!

From experience I can say use the hospitals resources, the social workers, counsellors, talk to the Drs, nurses to help put your mind at ease as much as possible.

Coarcs are fairly common but very hard to detect and therefore always either overdiagnosed as Drs ere on the side of caution or missed completely - they have a very high false positive rate.

So it's excellent news they have found it and can operate.

My son had the same chest surgery for a different heart problem (he was initially diagnosed with a coarc but he was fine at birth and at 7 weeks diagnoised with a PDA an aorta that they have in utero that pumps blood through the lungs didn't close at birth as it should have) he had the same cut down the side, ventilator tube, drain, morphine etc and spent time in ICN for a second time since birth. His surgey went very well. Sadly he passed away from other unrelated complications due to his prematurity.

If you can ask for a tour of the ICN this really helps .... see a baby that is on ventilation so that when you see your son it won't be such a shock.

This really does help, both our sons were prem and in ICN and when we did the tour it was very emotional experience and very foreign ... when we eventually found ourselves there with our sons it made it somewhat easier. And the staff in ICNs are really good they understand how scarey it can be for parents.

Don't be afraid to ask questions, It is amazing once you understand what is happening how it doesnt seem so scarey - I found strength in knowing.

Chin up thoughts are with you you'll all be fine! :hugs:

Shannon

[Kells]

Thanks Kells, for your story - it does help - just knowing that others go through these sorts of things and come out the other side. - Out of curiosity where was your DS's surgery performed? While Rohan's surgery isn't a matter of "life or death" as yours was, it has to be done before he is 6 months or else there will be permanent damage to his heart because it currently has to work so hard to pump the blood.

Anyway, i will keep you all posted as developments arise.

Thanks for all your support.

We only just got back from Adelaide this evening, so i'm knackered and heading for bed!!

L
xx[/QUOTE]


Hi Lisa,

My DS first surgery was at the Royal Childrens in Melb, with Christiaan Barnard- a very good surgeon. The team there are fantastic and will walk you through every step.

When he was 4 mths old we moved to Adelaide, and all other op's and checkups have been done here through W&CH. They are terrific. Not sure who you got to see, we had Malcolm Richardson who has just left and been replaced by a Terry someone?? Wendy Duncan who is the nurse there is just fantastic and will support you through everything - they even have the tissues on hand for after they get wheeled into surgery!! Really, the nurses and hosp staff are terrific.

It is a whole new world, but take comfort in the fact that the other parents around you are going through a similar thing, and support each other.

Good Luck. All will be fine xxxx

[Lisa C]

Thanks Kells. Yes, we saw Dr Terry Robinson, and you're right, all the staff do seem great. Dr Robinson gave us his card and told us to phone when we remembered all the questions we didn't ask - which is so true isn't it! - You leave their office and start thinking a bit clearer and it's like "why didn't i ask that..." - and then your family start asking you a stack of questions which are really obvious, but you never asked them yourself! I have quite a list written down, and will be phoning early in the week!!

L
xx

[Leez]

Hi Lisa

I was born with a coarctation of the aorta - diagnosed at age 4 after the GP detected a murmur and I went for the relevant tests. I had the operation to correct it at age 10 - its amazing to read the details of the operation you describe, as I had it done in 1979 and its exactly the same. I was lucky in that they removed the tube from my throat before I came out of the anesthetic (I was REALLY looking forward to waking up with a tube down my throat as you can imagine..). The tube in the side isn't really a problem but I won't lie, when they took it out it was exrutiating, however the pain lasted less than a second. The recovery I don't recall as being particularly difficult or painful, the drugs take care of that, however the standout memory is the unbelievable itching and pins and needles in my hands and feet because of the increase in blood flow. I have a scar (very faint now!) that goes from under my armpit around to just under my shoulder blade.

The main thing that I hope you find helpful is that I have lived a completely normal, active life and am now a (hopefully!) healthy 36 year old. I have just become a parent myself, and I now have a deeper appreciation of what my parents must have gone through in the years between my diagnosis and surgery, and the surgery itself. The worry that your baby has to go through that would be just awful. I remember my mother saying to me "I wish I could do it for you" and I thought that was a bit strange, but now I see why she said that. For me it was a bit frightening however I enjoyed having an exiting story to tell my friends and the 6 weeks off school almost made it worth it! I am really feeling for you and I hope everything goes smoothly.

Sorry to rave but I hope some of it was helpful.

Take care,

Lisa :hugs:

[JessandKirra]

my dd has a heart murmer that was picked up around 7 months old-thanks doc:mad:

she also has a lamens terms thinner than usual valve that pumps blood out to the lungs. and two holes in her heart.
She has to ahve surgery before she is 4 and yes it is the baloon thing in the valve to "stretch it" and they come in through the groin. I am unsure what happens with the holes at this stage they just moniter it I am due in again in sep.

This was a very stressful time for me when I found out. Get as much information as you can from the proffessionals the more I knew the more secure I felt.
My DD will be fine...live a great life...and play with her friends at school.

It is very scary though. Her heart has such a strong beat and always has. Her lips go blue from time to time. But she is in good hands. All I can do for her is love her.

Good luck.

[Lisa C]

Leez - thanks so much for that. It is amazing that it is still all exactly the same when your op was nearly 30 years ago! Thanks for the little detail about the itchy/tingly hands and feet - i will make sure i give lots of hand and feet massages to Rohan to allieviate any uncomfortable feelings he may have.

At least you could understand what was going on - some people say that it is good that Rohan doesn't understand cos he's clearly not going to be stressed - but i'm just worried that he will be upset with us for letting this happen to him. I can tell you that i'm going to be counting the minutes until he gives us his first smile in recovery.... he is such a happy baby. Even this morning when i woke him up to clear his nose with the nasal aspirator, he just gave me big smiles! - I expected him to scream at being woken up with saline drops down his nose, but no, just massive big smiles for his mum...

And i can absolutely 100% relate to your mum wanting to do the op for you. How many times have i had that thought!! Thanks so much for sharing your story.

Jessandkira - i know what you're going through. My DS has 2 holes as well - but they do seem to think they will close up on their own. Good luck with the balloon angioplasty. I hope everything works out really well for you and your DD.

As much as i obviously wish this had never happened to us, the thought that gets me through is that there are so many worse things that could happen with a worse long term outcome, and the main thing is that the overall prognosis with this condition is really very good (as evidenced by Leez) so we just have to get through the operation, so that we can get on with living our lives normally. So i'm just greatful that we have our DS and he will lead a full and normal life.

We've heard from the RCH and they seem to think that the op might take place in August. But we have to go to Adelaide the last week of July so that Rohan can have a CT Angiogram (done under General Anesthetic!). Will keep you all posted when we get an actual date.

Thanks
L
xx

[Leez]

Lisa

I'll be sending positive vibes into the cosmos! :hugs:

[Lisa C]

Lisa

I'll be sending positive vibes into the cosmos! :hugs:


Thanks!! We'll take them!
L
x

[Lisa C]

We have finally been given the operation date: September 13th. So we have a little while to wait, but that's ok - i need the time to get my head in the right place.

Now it's just a case of praying that everything goes as well as possible.

L
x

[DIANNEKB]

Hi Lisa C

Good luck with your date... Cody's op was meant to be tomorrow but another baby got sick and needs his surgery time :crying: so Cody is being postponed..hopefully only for a further 2 weeks..
We only have peadiatric cardiothoracic surgeon here in WA..... bit of a shame.

Take care and let me knwo how you guys go...

Di..xxx