Having a heart condition and starting a family...

I have sick sinus syndrome with bradycardic pauses and had a pacemaker as a result nearly 7 years ago as a teenager. 

My finacee last year was identified to have a cardiac rhythm condition causing VT. The diagnosis is still to be confirmed from genetic testing but suspected to be either ARVC or CPVT. Both are causes of sudden adult death. Both are dominant genetic mutations giving a 50/50 chance of passing it on to future children. 

We both wish to have children within the next few years. I have no idea where to start! (No, not in that way!).

I regularly see a peadiatric cardiology consultant who has continued my care into adulthood and my partner regularly sees the inherent cardiac conditions consultant and cardiology consultant. Sadly all are independent areas and my consultant is within an entirely different trust.

Who are we supposed to talk to this about first and who would lead the care given? Do i throw my poor GP with no specialist knowledge into this messy mix or a midwife? It would be great to start talking about it now so that when i do get around to being pregnant it is simpler. 

I would love to start a family but right now it seems a daunting prospect, especially as it would seem any child we do have has a stupidly high chance of having a cardiac rhythm condition.

Are we just mad for thinking about it?!

3 Comments

start at the ob

by Tracey_E - 2016-11-16 08:20:44

You are smart to think about this now! Know what you are getting into so you can make an informed decision. 

First of all, if all you have is SSS, there is nothing physically to prevent you from getting pregnant, so that's one thing to cross off the list. If the pacer fixes what is wrong with our heart, our pregnancies are no different than anyone else. Your ob will probably want to have a chat with your cardiologist so everyone is on the same page with your health but that part should be easy. 

Most ob offices have access to geneticists (sp?) who can go over your family history with you and discuss genes and statistics. I had some complications with one of my pregnancies and did this through the fertility specialist's office (I have other non-cardiac issues that made getting and staying pregnant interesting). It was kind of cool how they map your family history and genes. That was 20 years ago so it's probably come a long way since then.

Btw, both of my kids are healthy, active, and in college now. Both were born after I was paced, perfectly normal pregnancies and deliveries. 

Good luck!!!

Reasonable

by Gotrhythm - 2016-11-16 12:21:00

Your questions and concerns seem entirely reasonable to me. The person who can tell youi the most would be a geneticist. If I were looking for one, I might ask my doctor, but it I didn't get help, I would seek out the nearest university teaching hospital.

Inherited Cardiac Conditions

by Pacemum - 2016-11-17 18:49:10

Contacting the Yorkshire Regional Genetic Services may be a good starting point.

There are several ways in which you can be referred to the Inherited Cardiac Conditions Service:

Self referral – patients are now entitled to contact the hospital directly to request an appointment if they have, or are at risk of having an inherited cardiac condition. They can then contact your GP to get a formal referral.

GP referral – any patient with, or at risk of having an inherited cardiac condition can be referred.

Hospital referral - through your existing consultant

This link provides more details.  This service has strong links to your area and should be able to provide the information you are looking for.

http://leedscongenitalhearts.com/sections/view/92/yorkshire-regional-genetic-service

Hope that this helps.

 

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