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Post Heart Transplant: Pregnancy Planning

Firstly, I'm back!

It's been years! Unfortunately, my website domain expired and I couldn't remember how I bought it in the first place! Then I bought a new domain so you can find me at www.charlotteshearttransplant.co.uk a bit more concise than the previous site. But it looks months for this domain to work properly.

Anyhoo, I'm back and big things have happened since I last wrote a post at 5 years post transplant, I'm now 8 years post transplant.

Having a baby post transplant

This is a post that has been in the pipeline for several years.

It all started when I was 19 and diagnosed with Restrictive Cardiomyopathy, I had a conversation with a cardiologist following a CT scan who said 'I don't know if it's something you've thought about but you need to make sure you don't get pregnant, your heart isn't strong enough and it could kill you'.

That was the first time I realised that we probably wouldn't just pop out a baby one day, but I was dying so that was the focus for a long time. Then came heart transplant recovery, and being honest, I went through quite a lot of grief because I assumed that I would never get to carry a baby myself as a transplantee. I even had discussions with close friends about potentially needing a surrogate one day.

Over the years I came across women who are in my heart transplant Facebook group and a few had had a baby post transplant. I've always been terrified to have hope, it was almost easier to rule it out. So we became aunty and uncle to all of our gorgeous nieces and nephews and pretended that we didn't really want kids.

Pre Conception Meeting

In 2021, we were planning our wedding and as part of the preparation for the wedding, we started having conversations about what our life would look like and what we both wanted. We decided that it would be a good idea to speak to my transplant team and gain some understanding of what the future holds for us.

I called and booked a meeting with my transplant doctor to discuss having a baby.

He explained that my heart function is good, kidneys are good, liver is good and I'm basically in great health aside from the transplant and subsequently being immunosuppressed. He said that they would be happy to support me if we decided to have a baby. 

All in all the meeting was much more positive than I expected, I put it off for so long because I expected the answer to be a straight up no. I never had options during my transplant journey really, it was have a transplant or die within a couple of years so hope and choices was new to me and slightly scary.

Risks

We discussed the risks of pregnancy, the main one being rejection of my heart, this increases in pregnancy as your immune system ramps up as you have an extra foreign objects in your body. You can also be higher risk of rejection if your baby is a different blood type to you, thankfully, Ciaran gives blood so we know that our baby would either be A positive like me or A negative like him.

Multiple structural changes happen to your heart during your first trimester as you produce more blood and your cardiac output increases by up to 50%!

There were other things we discussed that I'd be higher risk of due to my immunosuppression such as miscarriage, low birth weight, pre-eclampsia and premature labour.

Genetics

An extra layer of our pregnancy journey is that we know which gene fault I carry and it's assumed that there's a 50% chance I would pass this on. We are very fortunate that my dad and step mum were going through a similar journey as my dad has the same gene fault as me and they didn't want to risk passing it on. So not only did we have all the information from my doctors, we had real life information from them.

I saw the genetics team while I was being diagnosed at Liverpool Heart and Chest Hospital so I emailed the genetic counsellor and asked if I could see her.

My next post will explore the conversation that we had with her and the different options we were presented with!

Thanks for reading, it's good to be back 😊 

If you would like any further info about genetic testing with Cardiomyopathy, I'd highly recommend Cardiomyopathy UK.

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