The mummy I might have been: how did being a heart parent change me?

When does parenthood begin? That moment when everything changes; when that person we once becomes someone new; someone whose decision-making and thoughts are changed forever. Does it begin with the birth of a new baby – when we “officially” become mummy and daddy? Or does it start further back with two little lines on a white stick?


For me, the big shift when I went from “me” to “mummy” came when I was 20 weeks’ pregnant. The day we first found out about Jessica’s heart condition. The day we became heart parents.


Whilst the needs of my baby had naturally come before my own since the moment I found out I was pregnant; this was the point at which I knew I would do anything for her. The moment when decisions were no longer about me, but about her. Putting my own fears aside and trying to be strong. From that moment on I was “Jessica’s mummy” and I knew that no matter what the outcome of my pregnancy was, that was who I would always be.


Parenthood changes us forever. It changed me in so many different ways. I became stronger, softer, less selfish. I discovered a capacity to love that was greater than I had ever imagined. All my feelings suddenly seemed amplified.


Me with Jessica and Sophie. "The mummy I might have been - how did being a heart parent change me?"

My journey through parenthood has always been tied up with being a heart family. I have never known what it is like to parent without that backdrop of hospital stays and check-ups, the fears and worries that come with having a child with complex medical needs. I have never really known “normality” – I have always been a heart mummy. Even though I am parent to a heart warrior and a heart-healthy child, the parent I am is, and will forever be, influenced by that.


Sometimes I wonder whether I would have parented differently had I not been a heart parent? That need to live in the moment and to make the most of it has had a big impact. Some things I suspect would have been the same. I probably would still have chosen to be a stay-at-home mum. The children would probably have still been allowed to climb into bed with us regularly. My parenting style would no doubt have still leaned towards attachment parenting.


I probably would have more relaxed; taken more for granted. We might not have done quite so many things as a family. That strong feeling of needing to make memories; make the most of the time I have with my babies has certainly influenced the things we do together.


Being a heart mummy has probably been a factor in some of our less conventional parenting decisions. The decision to embrace a family bedroom is probably a key one. I would have tried harder to encourage the children into their own beds in their own bedroom. My fear of the future has certainly influenced my lack of resistance to bed-sharing. That fear of the what ifs, of not wanting to ever be in a position of looking back and wishing I’d kept her closer, cuddled her more. Of being acutely aware that she won’t always be mine to cuddle close; that childhood days are fleeting. Doing my best to prevent the moments from slipping through my fingers.


Who would she have been, that mummy who didn’t have the rollercoaster ride? I will never know. She might have parented differently from this mummy sitting here now, but one thing I know for sure. She would have loved her children every bit as much and that is what matters most.

42 thoughts on “The mummy I might have been: how did being a heart parent change me?

  1. I often wonder what if too? I reckon being a heart mummy may have changed things a bit for tot but ultimately you are who you are. Your parenting morals and style will have shone through regardless. You do a fab job x#twinklytuesday

    1. Thank you so much Sarah. I certainly think a lot of things would have been similar but I’m sure being a heart mummy has made me appreciate the little things more than I perhaps would have done otherwise.

  2. Your journey is bound to have shaped your parenting journey, I think if I were in your shoes I would have made the same choices. Life is for living now, not all about what might be at some point in the future. I am so glad for all the family times we shared with ours when they were young, it is so different with teens who really don’t see parents as a priority in their free time! So if being a heart parent has made you do more as a young family then I’d see this as a really positive spin off #twinklytuesday

    1. Thank you Fiona. Living in the moment has definitely been a positive thing in many ways – it’s made me aware that chores can often be postponed in favour of making memories (although not always!) and I’m glad that we have focused on making the most of family time and enjoying it. It certainly helped me when Jessica started school – there was no sense of not having made the most of the time while she was little and home with me – we packed those memories in as much as we could and I’m so thankful that we did so.

  3. No doubt you would have been a bit different if you hadn’t been a heart mummy – or had a heart-healthy child first. But I’m sure all your basic parenting principles would have been the same. Either way, you would definitely have done a fantastic job! x

    1. Thank you so much Sarah. I am sure that my approach to parenting would have been similar but it’s certainly helped me make the most of the moments and appreciate them more than perhaps I would have done otherwise x

    1. Thank you so much Helena. Sophie used to be too wriggly to co-sleep but she’s much more settled these days!

  4. Hi Louise, our experiences in life do influence how we go about doing things. I have no doubt you would have loved your children just as much had Jessica not been a heart warrior. Maybe you would have been different in your approach to parenting, that is something you will never know. What I do know is that you come across as one very special Mum, and that is something to be proud of.


    1. Thank you so much for such a lovely comment Debbie. I am sure that a lot of things would have been similar but it’s interesting to think about how it’s affected some of my parenting choices and shaped the mum that I am today x

  5. This is something I’ve wondered too, and like you I completely accept that I’ll never know what kind of parent I might have been had we not had the CHD, prematurity and other congenital defects to deal with. I do think facing these challenges makes you take things far less for granted, and you treasure the littlest of moments so much more. I’m sure both of your girls think you’re the most fabulous mummy!

    1. Thank you Jenni. I definitely agree that it makes you less inclined to take things for granted and makes you treasure the little moments. That’s certainly been one of the positive things about being a heart mummy.

  6. Our first boy was totally healthy I returned to work when he was 6 months old. 20 months later our second boy came along and became increasingly ill. We also bed shared and held him tight until we finally found out at 11 months old he had a tumour which needed open heart surgery. He’s now 2.5 I never went back to work, we both quit our jobs to be together as a family whilst he recovered. There’s no way to would have done this had her not been seriously ill. We count our blessings every day and try to live life to the fullest. Maybe only parents who have been to the edge and been again can understand that?! #twinklytuesday

    1. I think having had that kind of experience does make you want to live life to the full and appreciate the little moments so much more. I hope your son is doing well now x

  7. This is such a wonderful post Louise. You’re so right, things can be so different depending on circumstances. You are a wonderful mummy and that’s what matters and I’m sure that the girls have had an even better childhood due to the fact you’re so aware that you have to be grateful for your time with them.

    1. Thank you so much Nat. It’s interesting to reflect on how being a heart parent has affected the way I parent my girls – making the most of the moments has certainly been a positive side of that x

  8. What a lovely post. I’m sure that there wouldn’t be many differences in how you parent. Of course it will have had factors in it but ultimately, I think we all let out guard down and do the things we think we wouldn’t (like me co-sleeping with an almost 6 month old!). Thanks for linking up with #TwinklyTuesday

    1. Thank you Lisa. You’re right – we do all end up doing things that we didn’t expect – I always suspected that I would co-sleep although I never thought that I’d end up with both the girls’ beds in our room and embracing a family bedroom because that’s what seems to work best for us at the moment! Thanks for hosting – lovely to link up again 🙂

  9. I love this post, you are so right – things could have been very different. I feel the same way, had my second so not died I would have been a very different Mummy too, I think our path to motherhood, and through motherhood, shapes the Mummy we are. I believe I am a better Mummy for what we went through, but I do wonder sometimes how our lives would be different. #sharingthebloglove

    1. It is interest to wonder how we would have been different. Like you, I think my experiences have changed me for the better though. I wouldn’t have wished for the journey we’ve had but I’m grateful for it too x

  10. Your post made me choke up! You are a warrior mummy for sure. I do sometimes go to bed feeling like I haven’t appreciated my boys enough or made the most of my day and I hate those times. I am trying harder lately to make sure that doesn’t happen. xx #sharingthebloglove

    1. Thank you Claire. I have many days like that too – it is easy to let days slip by and not feel like you’ve been enough that day. We’re only human though x

  11. This is a lovely post, we never know what could have been do we? I often think this way just with Eva’s allergies and if it has changed the way I parent and as I had a heart condition I think about the way my mum parented me. We all make choices for our children with this enormous love in mind xx #SharingtheBlogLove

    1. Thank you Laura. I didn’t realise you also had a heart condition. I wonder how my children will look back on my parenting and the way Jessica’s heart condition has had an impact. I think ultimately that enormous love we have is what really matters and hopefully that’s what our children will remember x

  12. I think it’s inevitable that our experiences as a parent shape our approach in lots of little ways but I suspect you’re right, that our principles and general stance on things would remain largely unchanged. I’m sure there is a sense of appreciating the little things a bit more than you would perhaps have otherwise, but I have no doubt that you would have been an amazing mummy whatever the situation. Thanks for joining us at #SharingtheBlogLove

  13. I love this Louise. You are a right there are things that happen in our children’s lives and our own that take us down a path in this wonderful world of parenthood. But it could have been a different path and life could have been different. But the love you have for your children remains the same. You are an amazing mum and your girls are lucky to have you. Thank you for joining us at #SharingtheBlogLove x

    1. Thank you Laura. So true that the love you have for your children is the same no matter what path life has in store for you x

  14. I think your approach to parenting would always have been the same, you are you and many parents choose to bed share etc even when their children don’t have any medical conditions. I think you’re doing a fab job and loving your girls is definitely the most important thing xx #twinklyTuesday

  15. A lovely post. I think we can all wonder what we would had been like had life dealt different cards.
    thanks for making me stop and think

    1. Thank you Suzie. It is interesting to reflect on how our experiences have changed us 🙂

  16. Such a truly beautiful post. I often think our children shape us to be the parents they need us to be. We could all learn lessons about making the most of every moment I think. #PostsFromTheHeart

    1. Thank you. I like the idea of our children shaping us to be the parents they need us to be – that’s a lovely way of looking at it 🙂

  17. This is a lovely post, full of insight. I have enjoyed browsing through your site and have learned quite a bit about CHD. You do a beautiful job of combining information and emotion in your writing. All the best to you and your family! #SharingtheBlogLove

    1. Thank you so much Mary. I try to balance the two out – it’s nice to know that it works well! All the best to you and your family too 🙂

  18. Aw a lovely post. I think when a child is ill you do automatically want to be with them more, so you must have experienced this but on another level. My daughter won’t stay in our bed even when she’s ill she just plays and won’t fall asleep even though I long for her to nap on me! A really lovely post and worthy #SharingtheBlogLove featured one xx

    1. Thank you Susie. That need to be close and protect them when they’re ill is definitely a strong one, and yes I think even more so with all the hospital stays and surgeries. My youngest was never much of a bed sharing when she was smaller but now loves to come in and snuggle x

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