Q&A about inherited heart conditions with the British Heart Foundation - ANSWERS BACK

[LucilleMumsnet]

This week we're running a Q&A about inherited heart conditions with the British Heart Foundation. The latest campaign from the British Heart Foundation (BHF) focuses on raising awareness of inherited heart conditions and the research the BHF is funding in this area.

The BHF estimates that around half a million people in the UK could be at unusually high risk of developing heart disease or dying suddenly at a young age. Inherited heart conditions can affect one or several members of a family. If either of your parents have a faulty gene, there is a 50/50 chance you could pass it on to each of your children.

The BHF is funding research into a whole range of inherited heart conditions, to better understand how to treat and prevent them, as well as developing genetic tests to improve diagnosis. They're asking for any concerns or questions you have about living with an inherited heart condition at any stage of parenting, whether you have one and are considering having children or are currently pregnant, or if your child has an inherited heart condition.

The experts answering in the Q&A will be:

Kelley Hart, heart patient (pictured)- Kelley has Long QT syndrome, an inherited heart condition which can cause an abnormal, rapid heart rhythm and can lead to sudden death. Long QT affects around 30,000 people in the UK. She found out her baby had inherited her heart condition the day he was born.

Chris Denning, BHF-funded researcher - Professor Denning is trying to find out more about Long QT syndrome. He uses cells taken from patients’ skin to create new heart cells that could aid our understanding of the condition and test new treatments.

Andrew Staniforth, clinical cardiologist - Dr Andrew Staniforth is a clinical cardiologist working at Nottingham University Hospitals NHS Trust. He treats adults with heart rhythm abnormalities and has been supporting Professor Denning with his research for the last five years.

Post your questions before 10am on Monday 16th June and we'll post up the experts' answers the following Monday 23rd June.

[noddyholder]

Hi I have hocm and was wondering if the skin cell therapy is being tested for this? And if not what are the latest treatments. I am currently on disopyramide. Thanks

[TequilaMockinBird]

Hi, I was diagnosed 3 years ago with Wolff Parkinson White, which I believe is usually inherited. However, neither of my parents had/have this condition - can it skip a generation? And is it worth getting my 16 year old daughter tested for it, even though she has no symptoms?

TIA

[NK346f2849X127d8bca260]

I have a mitral valve prolapse, ok at last check-up.

My mother had valve replacement 5 years ago because she was born with a bicuspid aortic valve.

My 10 year old daughter has recently been diagnosed with 3 leaking heart valves, the Pulmonary, Tricuspid and Aortic ( on the commissure between right and left coronary cusp) all the leakages are mild and she is to be followed up with another ECHO in 2 years.

Will these leakages get more severe or stay the same?

Is it possible to inherit these defects?

Our 13 year old had Kawaskai disease and has cardiac follow up,his valves are all normal.

We also have another child, should he be checked?

[weebarra]

DS2 (now 3) had a coarctation of the aorta (repaired as an emergency at ten days old) and has a biscuspid valve and aortic stenosis. There is no history of heart disease in the family but when DH went for a work medical they asked if he did endurance sports as his heart muscle was enlarged. Would it be worth asking for a cardiology referral in view of DS2's condition?

[Bollard]

My mother died of a heart attack in her early 60s, as did her mother and many relatives in her maternal line. Her father died of a heart attack in his 40s. Her brother had a non-fatal heart attack in his 50s.

I'm in my 40s and in good health but I worry about meeting the same fate as these relatives. Actually, I don't so much worry as assume that I have at most 20 years left. Can I do anything beyond follow the lifestyle recommendations?

[LadySybilLikesCake]

Hi.

My mother has dilated cardiomyopathy. Her sister (my aunt) died of a ruptured aortic aneurysm, my uncle (her brother) is living with an aortic aneurysm and he's had a couple of major MI's (I think he now has a pacemaker). My mother has a weakness in one of the ventricles and she's had a mild MI. She currently has a pacemaker. My older brother was treated for a ventricular septal defect as a baby.

I've been told that I need cardiac screening by my mother but she hasn't said what (CXR/ECG etc). I had an echocargiogram a couple of years ago which was requested by my GP, but nothing else as my GP didn't know what I needed and my mother's cardiologist hadn't sent her anything. My mother seems to think that my son also needs screening but I don't know if this is correct. My mother gets confused and she doesn't always remember what the doctors have said. Is there any way I can find out what sort of screening I need and whether my son also needs this?

Thank you

[shouldnthavesaid]

I've had palpitations for years and at one stage was being investigated for serious causes. Have had quite a lot of normal ECGs, one that was a three minute trace, and a 24 hour monitor that showed up a few PACs and PVCs.

I don't suffer with either half as much as I used to a couple of years ago, however I am always confused by the triggers, as the biggest trigger for me is anything that increases my heart rate such as being highly emotional, sexual activity, standing after sitting.. Everything I read online suggests that PVCs/PACs triggered by exercise (increased heart rate, I guess?) is a sign of something more serious going on.

I have also had, once, a run of what felt like continual PVCs which lasted about three beats and then stopped suddenly? I've since read online that could be a sign of VT. I've mentioned this to a couple of GPs neither of who seemed concerned. I've always been especially worried about long qt as I take anti depressants (cipralex) that carry a warning for it.

I'm terrible for looking up "Dr Google" and have at times gotten very anxious over these palpitations. Any advice or reassurance would be appreciated, thanks :)

[MadameJosephine]

My 18 year old son was hospitalised 2 years ago following a panic attack and was found to have a long QT interval on ECG. He was referred to a paediatric cardiologist who repeated the ECG and found no problem. He also had a normal echo at that appointment. Does this mean the long QT was a one off or could it be related to panic attacks (he has an anxiety disorder)

My daughter and I have recently been diagnosed with Classical ehlers danlos syndrome and are awaiting appointments to screen for mitral valve prolapse. I think my son probably has EDS too but as he was not at the initial appointment with me he has been referred to genetics for diagnosis. Is there a link between EDS/mitral valve issues and long QT?

[mrsbucketxx]

im reallly worried for my children, my husbands father died in his thirties. My father had a heart attack in his 40's and my brother also died aged 34.

how do i get tested for any faulty genes and for my children. so i can protect them in future any advice will be gratefully received?

[Gowaygoway]

My Mum has Hypertrophic Cardiomyopathy. She's 74 and has palpitations, breathlessness, occasional irregular heart rhythms. My brother and I both had ultrasound scans and were told by our GPs we didn't have the condition based on the sonographer's report, although we haven't seen cardiologists.

Do you think we should see a cardiologist to confirm this or is there no need?

[indyswoofer]

My mum has suffered with AF since her late forties and my aunt (mums sister) also has it. My 30 year old brother has just found out that he has the same condition, apparently this is unusual for a fit and healthy young person. My mums father died of a heart attack in his late forties. Should I and mine and my brothers children be screened? My brothers consultant says that this is not a hereditary condition but it seems far to coincidental??
Would appreciate someone else's thoughts.

[Ruhrpott]

I have HOCM and an icd. What are your thoughts on taking antibiotics before dental treatment? I insist in having them and so far the dentist has agreed even though the nice guidelines say they are not needed.

[heronsfly]

I would like to second Ruhrpott's question and also ask about the connection between severe dental infections and heart disease, I had a heart attack followed by a bypass 5 years ago and the fact that I have suffered from a large amount of dental abscess over the years was commented on a few times while I was hospitalised.

[iloverhubarbcrumble]

I was born with patent ductus, coarctation of the aorta and bicuspid aortic valve, so all physical defects rather than rhythm issues. Several ops, now in early 50s, LV inefficiency (improving again since 2nd aortic valve replacement).

My interest in this thread is whether my physical congenital defects are genetic or one off bad luck (there is some story about my mother being ill when she was six weeks pregnant with me but all abit vague).

My daughter checked in utero, all good, she is fit and healthy. She has recently wondered whether she may have increased risk of having a child with heart defects. I have no idea. Is this likely or not? Everyone else in my family is fit and healthy, not history of heart problems.

Thanks for any insight

[Barbie1]

Hello

I don't really know if I'm entitled to even ask as I'm not sure my condition is heredity ...but I'll be cheeky and ask anyway.

During my first pregnancy I suffered severe palputations which caused me to black out a few times.

After countless test and the wearing of the heart monitor for 24 hours it was discovered I was suffering from ASD.

Due to pregnant issues my ob/ gyne advised not to take the recommended medication. Instead I had continuous monitoring.

I was due to have an operation to repair the hole once I had finished breast feeding but I feel pregnant again almost immediately so the operation was put on hold.

The second pregnant was worse with regards to palputations but again I went down the monitoring route as opposed to medical.

Now for my question (sorry this is turning into an essay)

I'm currently pregnant with my third. I'm having about 6-10 eposides a day of palputations and light heads. They last about 2-4 mins a time.

As both my previous children had a low birth weight and were emcs my doctor is worried that I could be putting this pregnancy at even higher risk by taking any medication.

I really don't know what to do

Situation not being helped by living abroad and the doctors having very, very limited English...plus we have a huge relocation coming up in the next few months and a summer spent looking after my dm who has had a recently learnt her cancer has returned.

My stress levels are through the roof!

Any advice would be great.

[raydown]

Blood tests for fertility reasons showed that I have high lipoprotein. The doctor said this would be genetic and asked if there was a family history of heart disease. Should I be worried about this? I have a healthy BMI, don't smoke. My cholesterol is raised at 5.7 despite having a good diet and exercising.

[KaFayOLay]

My father was found to have atrial fibrillation after suffering a dvt.
His doctor believes he has had this since being a young man and has more than likely had a heart attack along the way. The fact that he is supremely fit and still trains to a high level has more than likely masked any symptoms he might have had.
He is now on warfarin.

His mother was also on warfarin for the same condition.

Should I and my children be checked out for this?

[RubyrooUK]

My husband was born with sub valvular aortic stenosis. Basically he has a bit of extra muscle and it causes a little bit of his blood flow to "splash back" as I understand it. He is in his late thirties. He is currently ok (ie requires checks annually but no treatment) but they tell him that it will deteriorate with age. What can be done when it does? Different doctors have told us different things.

Also - can it be hereditary? One child was checked for it in the womb but the hospital refused to check our second child as they said it could only be passed through the mother. Any views?

Thank you.

[Auntimatter]

Of heart problems babies can be born with, what percentage are inherited (ie with the clear genetic link you describe in your article) and what percentage just random/probably just random?

NHS care is very good for the structural stuff (though under the current review); is it so organised for the inherited/rhythm problems you describe?

[Enuffsaid]

I have hypertrophic cardiomyopathy and my 14 year old son has been routinely tested for this condition. I have symptoms ie, arrythmias and have an ICD in place. My condition shows up on an ecg and an echo. The gene has not been identified.

At my son's last appt, he underwent an exercise test, which revealed he only reached 70 pc maximal predicted workload. However, he is currently not showing signs of HCM on an ecg and echo. My question is it possible for my son to have HCM but not display the structural changes which would show up on echo/ecg even though I have an increase in heart muscle myself. I have heard there are cases whereby an individual can display a normal sized heart but still have HCM and therefore have a risk of sudden cardiac death. Would this type of HCM run in families thereby it's not possible for him to suffer from this type?

Also, can there be any other reason why a child could have a low VO2 during exercise testing that is not connected to a cardiac issue?

Thank you

[LucilleMumsnet]

This Q&A is now closed and we've sent the questions over to the experts. Thanks to all who took part.

[Barbie1]

Mnhq

I might be being a little stupid here but have I missed the answers!

[LucilleMumsnet]

We now have the answers back and will be posting them up on the thread shortly. Sorry for the short delay!

[BHFExperts]

@noddyholder

Hi I have hocm and was wondering if the skin cell therapy is being tested for this? And if not what are the latest treatments. I am currently on disopyramide. Thanks

Chris Denning: I'm making the assumption here that you are talking about hypertrophic cardiomyopathy. If that is the case, then you're absolutely right that the skin cell technology is being used to make stem cells, which are then converted into heart cells. Some good work has been published from excellent groups in the USA. However, at the moment the work is mainly at the stage of proving these stem cell-derived heart cells function in the ways we expect and so have the potential to be valuable in understanding the genetic condition(s) better and eventually finding new treatments. This is likely to take another few years before we can start to use these cells to trial new treatments in the lab.

Several labs are trying to figure out if they can use this 'reprogramming' technology to turn not only skin cells but also blood cells and even cells shed in urine into stem cells. This includes my own lab and we are always looking for willing volunteers to provide us with skin, blood or urine – just remember that this always needs to be done through a proper consensual process that involves your doctor or consultant.