Minimal Invasive Surgery for infants in the United Kingdom

[annbates]

My daughter aged 2 years was diagonosed with bacterial endocarditis in July of 2003.  Fortunately she survived but now has mitral valve regurgitation.  Her Cardiologist says she will need surgery in the next few years depending that her condition does not worsen.  I was reading on your website about minimal invastive surgery.  Will this type of surgery becoming to the UK.  If so, would she be a candidate for such surgery.  I've also taken her out of day care because I am frightened the endocarditis will return.  What are the chances of her picking up this bacteria again?  I know I carn't wrap her up in cotton wool for the rest of her life, but I am really worried about it.  If this type of surgery is not available in the UK when she needs it, would it be possible for her to come to the state for treatment?  How much would this cost?  An early response would be most welcome, as I am extremely worried.  Thanks Ann

[snitch]

Hi there!

I'm sorry to hear that your Mom has died. Please take my condolences.

I haven't found anything about minimal invasive heart surgeries in infants, but here's the link for the Heart Centre Leipzig:

www.rhoen-klinikum-ag.com/rka/frameset/k4
(it's in English)

I'm feeling much better since I have had surgery. I have had lots of symptoms before, like shortness of breath, cough, extreme pressure in my head, which made it impossible to live a normal life. Three weeks after surgery, my third semester at university started, and I was there! I still feel a bit insecure, because a lot of things have happened, no one ever thought that could happen. It's difficult to be optimistic. I often ask myself: "So what's next?"

My diagnosis was a big shock for the whole family, mostly because until then all I have had were arrhythmia, and suddenly there was this really important vein which was completely blocked. My heart problems, the arrhythmia, started when I was 17 years old, so I wasn't born with it like your daughter. My parents and I did not have time to "grow into it", if you can say so. My parents took me to Leipzig and stayed there until I was allowed to go home. They were so worried about me! They thought that I might not survive surgery. To be honest, I never thought about that possibility.

I hope your daughter's regular check-up goes well and that you get some good answers to your questions about surgery. I keep my fingers crossed for you!

Best wishes & take care,
Inga

[annbates]

Hi Inga

Sorry I have not replied, my mum died on the 17th Feb, haven't been at work to e-mail you.  Thanks for your info.  I am so glad your operation went well, and that you were not too worried.  Holly-louise has an appointment to see her cardiologist on the 7th April for her usual 4 monthly check up.  Echo, etc.  I really hope nothing has changed.  I carn't really understand why they have to wait until they perform the operation.  I would rather they get on and do it so that we can get on with the rest of our lives.  It's so frustrating.

Inga, has having your heart operation impeided you from any physical activity?  Do you feel physically better after your surgery?  How did your family cope with it all? Will you require any further surgery in the future?

When we go to see Holly-Louise's cardiologist in APril, I will ask him about the possibility of minimal invasive surgery and enquire if she could be a candidate,  I'll keep you posted.  I've looked on the web, but carn't find anything on MIS on pediatrics, have you had any luck?

Anyway, hope things continue to be fine with you.  Speak soon.

Ann

[snitch]

hi!

i'm not sure if they are performing the minimal invasive surgeries in children, but i bet they do in thoses cases where it is possible. i'll try to find out, maybe it's on the website.

i found out that i needed surgery in september last year. before i had had six electrophysiologic studies to ablate the areas in my heart (right atrium) which were causing a rapid heart rate. the ablations of my sinus node (the natural pacemaker of the heart) caused the severe stenosis (almost complete blockage) of my superior vena cava. that is the vein which carries blood from the head and the arms back to the heart. the stenosis developed very slowly within four years, and when i finally had symptoms and was diagnosed, there hardly was any more blood going through the vein. it was a shock for me & my family. some new veins had developed, trying to take over the work from the superior vena cava, but they failed. also, i had lots of blood in my pericard.

i was a bit afraid of the surgery, although i never ever thought about the possibility of not surviving it. but everything just happened really quickly, there wasn't much time to think about it. my parents went with me to Leipzig (we live near Hamburg, I study in Bremen). it was good to have them by my side.

i'm doing pretty well now. on thursday i'm going to see my cardiologist in hamburg who will perform an angiography to check on my veins.

by the way, i'm 22 years old and also have a pacemaker.

i'll try to find out whether they perform minimal invasive surgery in children at the Heart Centre Lepizig or not, and then post again.

best wishes,
inga

[annbates]

Hi Inga

Thanks for your comments.  It's really reassuring and encouraging to know that minimal invasive surgery is available in Europe. Hopefully by the time my daughter requires her mitral valve to be repair this type of surgery will be available in the UK.  How are you now after your surgery?  When did you find out you had a heart problem? How did you feel about heart surgery?  Most people whom have posted comments on this website seem to have taken it all in their stride.  Were you worried?

Can you tell me if minimal invasive surgery is performed on children in Germany?  I would be most interest to know.

I would be interested to hear your views.

Thanks again for your comments
best wishes
ann

[snitch]

Hi there!

At the Heart Centre Leipzig (Germany) they also perform minimal invasive heart surgeries, and they do have cardiologists and cardiac surgeons for children, too. The expert there is Prof. Dr. Mohr. I have had minimal invasive surgery there to re-construct my superior vena cava after complete obstruction. Prof. Mohr did a very, very good job! The incision is about 7 or 8 centimetres and it's right below my right breast, so you hardly see it. I did not suffer from a lot of pain afterwards and was back at home a week later. I'm 22 years old.

Just to give you an option here in europe.
Best wishes for you & your daughter!
Bye,
Inga

[annbates]

Thanks for that, you have definately put my mind at rest about the bacterial endocarditis returning.  My daughter initially was diagnosed with pneumonia, doctors found the heart murmour by accident.  She was then scanned and they found that she had bacterial endocartis, along with plenty of blood tests. Cardiologists at Glenfield in Leicester seem to think she may have had a faulty valve from birth, but this went undetected.  Thank god for the pneumonia or we would never have known.  She could have got to the age 30 then suddenly died.  At least we know now she has a problem and everything possible is being done to rectify it.  We still have this hanging over us, but at least she's being monitored/scanned very four months.  So thanks again!  I'll keep you updated.

Excellent website by the way, very informative with digestible information.  Makes you realise you are not alone, even though when she was diagonosed we thought we were the only ones in the world going through this.

[CCF-M.D.-RCJ]

Ann,

Thanks for the post.

Q1:"Will this type of surgery becoming to the UK."

I'm sorry, but I simply don't know the answer to this question.  Your pediatric cardiologist may, however, be a good resource.

Q2:"If so, would she be a candidate for such surgery."

I can't address the candidacy of your daughter for an operation without knowing more "particulars", and seeing the echo of the valve.  Also, I'm simply not sure if minimally-invasive surgery is available for children.  Their chests are already small, which makes the surgical window small.

Q3:"What are the chances of her picking up this bacteria again?"

You didn't provide which bacteria she had in the first place, however, once a valve is damaged, it is more likely to become reinfected than a valve that is normal.  The good news is that endocarditis is a relatively rare infection, so even if you double the risk, the chance is still low that she will develop the infection again.

Q4:"How much would this cost?"

Try talking to our financial professionals -- they are available through the Cleveland Clinic website.

Best of luck.