Any MNers with congenital heart defects or experience of it, or any cardiologists out there, could I please pick your brains..

[insertwittynicknameHERE]

I was born with an enlarged heart and a leaking mitral valve, I have been for an echocardiogram today and the cardiographer (is that even the word for them?) said that one of my other valves has started to leak also. He didn't elaborate as to why. I have a bit of a wait to see my consultant now (sometime in June I believe) and I need some questions answered.

Will/Can this affect my ability to give birth naturally? (I am nearly 22 weeks, and I had an epidural with DD so all seemed fine then)

Will/can this affect my ability to have any more DC, I would love 4, but have a feeling I may have to stop at 2

Is it possible that this is what is causing my severe breathlessness?

I did ask these questions but he just kept saying that I will have to speak to my consultant. TBH he seemed more interested in me agreeing to coming in for students to practice on me as apparently I produce good pictures/images (I said yes of course though)

I do have many more questions but I have a lot going around my head at the mo so cant remember them

I have no experience of what you are talking about, but do you REALLY have to wait until June to see your consultant if you are 22 weeks pregnant with very real concerns?

(I'm shocked)

Ring you cardiologists consultant and tell them that you're pregnant and very worried and you need to speak to them asap. They should ring you back or arrange an asap clinic appointment. It's absurd for you to wait another 12 weeks when you can be getting information now and plan accordingly. Are you under a obstetric consultant with an interest in cardiac complications in pregnancy? If so - it would be worth ringing them too.

sorry - typed in haste - that should be 'ring your cardiology consultant's secretary'

I have a leaking aortic valve and was able to give birth naturally. I had an epidural, and they used a ventouse, as they didn't want me to push for too long, but all OK. My cardiologist didn't have any concerns about the birth.

I was able to use the pregnancy card to get the cardiologists secretary to move my appointment earlier (my original appointment was for a week after my due date) so I would echo the above comments.

Hope all is OK and good luck with your pregnancy.

I have tried ringing my cardiologist before and it is not possible, I saw him 2 weeks ago and he said that the next available appointment is in June. I did tell him that I am due in July and asked if it was possible to have the appointment earlier he said no

My obstetric consultant is very good and is keeping a close eye on me for many reasons during this pg including my heart problems. I think I will wait until I see him again (23/3/09) and see if he can gee it all up a bit.

TBH I am quite worried that the strain of the pg has caused my other valve to start leaking.

kk75, how did you feel while pg? I felt the best I ever did while pg with DD but this one is awful IYSWIM. My chest feels tight, it is hard to breath and I cannot catch my breath without sitting down for a while. Did you ever get it like that?

Right well your cardiologists reposnse is total bollocks imo. That is not acceptable for you in your situation.

Have you spoken to the PALS in your local hospital - they should take this issue up for you. Appointments are very much under pressure in all specialities (I work as a NHS manager) but a pregnant woman with a new finding and serious concerns should be a priority.

NL, I can ring my obstetric consultant and speak to him, I only saw him yesterday and he did ask about my appt for my echo and to ring him if any concerns in the meantime.

Should I ring and speak to the PALS people. I might just try one more time to see if I can get an earlier appt to see my cardiologist and if not then I will speak to PALS. I wouldn't know what to say though so may need to back here and ask.

I will have to ring tomorrow now as they finish at 16.30 in cardiology.

Thank you.

info on PALS

Basically you just want to tell them that you're concerned because you can't get an earlier appointment and you know your echo has changed and your health and that of your baby is your primary concern so could they please get some information/an appointment for you.

Thanks NL, I will ring the cardiologists secretary tomorrow and try once more to get an earlier appt and in no joy I will contact PALS.

Thank you.

I've bookmarked that link as well so that I can go straight to it should I need to.

I felt OK during the pregnancy - I was slightly breathless but I think this was normal (this was my first pregnancy so I have nothing to compare it to). I live on a 4th floor flat with no lift and was able to walk up the stairs OK, as an example.

My condition was diagnosed a few years ago, so before I tried for a baby with my cardiologist. He said that pregnancy was unlikely to exacerbate this particular condition and that leaky valves tend to cope quite well - however, I'm no expert of course...

Could you get your Obstetric Consultant on your side and perhaps he can somehow put pressure on your getting an earlier appt?

Best of luck, you do need to be able to put your mind at rest....

That is reassuring kk75, I hope it is not pg related.
I had a little bit of breathlessness with DD but I was 35+ weeks when it affected me.

I have had severe breathlessness with this pg since I was about 12ish weeks, I cant even move from room to room without getting breathless, dizzy and light headed.

Good job DD can go upstairs by herself (with me behind her) or I would struggle getting her to bed, although DH does it most nights at the minute lol.

Orangina, I can call my obstetric consultant anytime he said so I might just do that. he is very involved WRT my cardiology care in this pg. I will try just one more time with cardiology and if no luck will try PALS and my OB cons.

I would definitely speak to your obs consultant and ask to see him earlier - tell him what the ECHO technician has told you, as it may well have some bearing on how you deliver, and how long they would let you labour for. The leaking of the other valve may well be related to pregnancy, and in terms of how they would manage it, the cardiologist would probably recommend a watch and wait approach, rescanning after you've delivered to see if the valve function has improved - it may well be that the increased blood volume and therefore increased workload of the heart had caused the other valve to leak. Did they mention whether it was your Aortic valve? If so it could explain the symptoms you are getting.However, it is important that your cardiologist knows that you are struggling to manage everyday tasks, so they can at least review you and keep a bit of a closer eye on things.Make sure that as far as you can you are resting plenty, and not overdoing it (too much!)
I can imagine how stressful all this is - I'm 30 weeks with a nearly 3yr old, and am finding it knackering!!

witty - some good advice here - if you have a leaky mitral it could mean your aortic valve is struggling whilst you're pg. Your heart has extra blood volume to move and if it's not coping the blood then backs up in your lungs and causes you to be breathless.

Are looked after by a GUCH consultant or an ordinary cardiologist? I'm a bit disgusted that they're not seeing you sooner.

wow, thank you for all of the posts and advice, I am being seen by an ordinary cardiologist. The Dr who did my echo today didn't say weather it was my aortic valve, I did ask but he just kept saying to speak to my cardiologist.

What is GUCH consultant?

from a quick google I think GUCH s Grown Up Congenital Heart - so if your consultant has a specialism or interest in that then they are likely to know more about your particul;ar condition than a cardiologist who has mainly treated patients with valves which have started leaking later in life?

Thanks NL, I try not to google too much as I get all anxious after reading the horror stories lol. I do admit to bit of googling now just to see whats what and am deffinatly getting on the phone tomorrow to try to get an appointment sorted out earlier rather than later.

Sorry - yes NL is correct. GUCH consultant is specialist in congenital rather than aquired heart disease and therefore probably more experienced in dealing with the effects pregnancy have on the heart. The GUCH website here has a list of GUCH units. Your GP can refer you.

Congratulations on your pregnancy BTW

Thank you SMBK, I used to go to leeds when I was younger once every 6 months to a year, then they said I could go to our local hospital so Leeds discharged me and sent me locally.

I will ring them just to see if I can get any advice on it all. The more I know the better it can be.

Thank you.

The DoH guidelines say that you are entitled to be seen at least once by a GUCH witty - and as a woman of child-bearing age you'll probably find they'll keep you 'on the books' even if they don't see you often. A sort of 'shared care'.

We have to joys of transition to adult services in the next couple of years with dd. I'm dreading it to be honest.

Saggar, it is hard work isn't it, I take it your DD has heart problems. My mum was always so stressed and worried for me, still is even though I am nearly 30.

Saggar - the department I work in has just done quite a bit of work on the transition process to adult care. That's renal not cardiac but might reassure you that there is a broader awareness out there that this is a tough issue for parents and children. As the parent of a child with a CHD (albeit a mid one) I can tell you I'm not looking forward either to the day when I have to trust her with responsibility for her own health!

OP - ringing Leeds is a good idea - we are under the paeds service there (though dd2 is perfectly well and not due for review for years) - I'm sure they will help if they can.

Saggar, if your DD has had any surgery, and needs further work doing, it'll be the same surgical team at BCH, they just transfer to QE for the actual op. When I worked there, ST had just been appointed as the GUCH consultant, and she seemed really lovely, and was well liked by the patients..

OP best of luck getting an appointment sorted