What it means to be a heart parent

It took just seven words to change my entire life.

Seven words which broke my heart, shattered my dreams and turned my world upside down.

Seven words from which I emerged a stronger and more compassionate person.

 

“There’s something wrong with the baby’s heart.”

 

In that moment, I felt fear colder and stronger than any I’d ever known before

In that moment, I knew I would do anything I could to save my child’s life.

In that moment, although I could barely grasp it, I became a heart parent.

 
What it means to be a heart parent - an insight into life as a parent of a child with CHD - Little Hearts, Big Love

 
I learned to hold on to hope and faith when there was nothing else left to do.

I learned to live in the moment and find joy in the darkest of times.

I learned to put my trust in the skilled hands of those who were caring for my child.

 

There were many moments when all I wanted to do was run and hide, to pretend this wasn’t happening.

There were many moments when the fear of the future felt overwhelming.

There were many moments when it seemed the only thing that kept me going was hope and the love, support and prayers of those around me.

 

This is what it means to be a heart parent.

 

I have looked at the huge hands of a surgeon and marvelled that they can perform such intricate surgery on something the size of a walnut.

I have sung my child to sleep in the anaesthetic room of an operating theatre.

I have handed my child to a surgeon, knowing that they will stop my child’s heart and prayed that I will see my child alive again.

 

I have spent hours pacing the corridors of a hospital whilst my child undergoes life-saving surgery.

I have spent hours sitting in intensive care listening to the endless beep of machines.

I have spent hours holding my child in my arms, thrilling at the joy of being able to do so.

 

 

I have learned that miracles can and do happen.

 

There are many moments where my feelings as a parent seem to be amplified:

Anxiety whenever my child is unwell.

Guilt on those challenging parenting days that come to us all – those moments when bedtime feels like it can’t come soon enough and I feel guilty for not enjoying the moments that I know I am so blessed to experience.

Joy and pride in all the little milestones that suddenly become extra special because of the journey it has taken to achieve them.

 

The road has been rocky at times and there are many dark moments still ahead.

I do not know what the future holds and I do not dare to try and look ahead.

This is a road I would never willingly have chosen to walk and yet I know I would walk it all over again for the joy and blessing of having my child with me.

 

I have discovered a faith that has helped me to endure throughout the dark moments.

I have discovered a strength that I never knew I possessed.

I have discovered a love stronger than anything this journey can throw at us.

 

This is my life.

This is our journey as a family.

This is what it means to be a heart parent.

 

Me and hubby holding Jessica in intensive care. You can barely see her with all the wires and tubes covering her.

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68 Comments

  1. July 14, 2015 / 3:19 pm

    Beautifully written & gorgeous photos Louise!

    • Louise
      Author
      July 14, 2015 / 9:58 pm

      Thank you Kim x

    • Debbie
      July 17, 2015 / 8:51 pm

      This says it all—everything I have ever felt. My baby will be 22 years old in the coming weeks. Keep the faith and never lose hope! God Bless you always!

      • Louise
        Author
        July 18, 2015 / 10:36 pm

        Thank you Debbie – it is always so encouraging to hear stories of adult ‘heart babies’ – hope that your baby is doing well x

    • Natalia
      February 6, 2016 / 10:54 pm

      I would like to know how are you doing, and how grown up your child is now. You are a blessed mom, and your child is a miracle! Amen!

      • Louise
        Author
        February 7, 2016 / 1:09 am

        Thank you Natalia – my daughter is now 4 and doing very well 🙂

  2. July 14, 2015 / 7:20 pm

    Beautiful Louise. You have a way with words for sure and your story is a powerful reminder of how lucky we all are to have our gorgeous children. Thanks so much for linking up to #thetruthabout again Xx

    • Louise
      Author
      July 14, 2015 / 9:59 pm

      Thank you Sam – being a parent is definitely a blessing even though it doesn’t always feel that way – especially during the more challenging moments but when I look at my girls, it often hits me just how lucky I am. Lovely to link up to #thetruthabout again.

  3. July 14, 2015 / 7:44 pm

    You are such an inspiration – I honestly admire you so much. This is a wake up call to mums like me that often find myself complaining about such trivial things. thank you for sharing xx

    • Louise
      Author
      July 14, 2015 / 10:00 pm

      Thank you so much. I have to confess that I do also find myself complaining about trivial things but every so often when I stop and look at my beautiful girls, it does hit me just how very lucky I am to have them x

  4. July 14, 2015 / 9:15 pm

    What a beautiful post. What an amazing little girl she is and what an amazing mum you are. That photo brings tears to my eyes. x

    • Louise
      Author
      July 14, 2015 / 10:02 pm

      Thank you so much Sarah – I am very lucky to have her and that photo is one of my favourites – such a wonderful moment being able to have those cuddles in spite of all the tubes and wires x

  5. Jennifer Lightfoot
    July 15, 2015 / 10:58 am

    my niece and her husband are going through this at Birmingham children’s hospital, since last October,they are still there. I don’t know how they keep going, they remain so strong and Kaleb their son is a little fighter,you are amazing

    • Louise
      Author
      July 16, 2015 / 6:18 pm

      Oh my goodness, that is a long time to be in hospital. Glad to hear that Kaleb is a little fighter and hope that he will be well enough to come home soon x

  6. angela hirst
    July 15, 2015 / 1:26 pm

    I am also a heart parent it isnt easy at all my 22 month old daughter has h.l.h.s .

    • Louise
      Author
      July 16, 2015 / 6:19 pm

      My daughter has HLHS too. Definitely agree that it is not easy. Hope your daughter is doing well x

    • Louise
      Author
      July 16, 2015 / 6:20 pm

      Thank you Sara x

  7. July 15, 2015 / 5:14 pm

    Excellent post. I can relate to so much of it too. I love the pictures – something that I don’t really have as our journey started way before the digital age!

    • Louise
      Author
      July 28, 2015 / 9:48 pm

      Thank you Philippa – digital photography is something I am very thankful for – it allows so many memories to be captured x

  8. July 16, 2015 / 5:15 am

    Awwwwww … what a brilliant piece! Indeed, though huge hands of the surgeon sorting out tiny little hearts, I can’t imagine how they do but I’m glad they do. I can’t imagine how it must have been hearing those 7 words and I’m thankful to get glimpses from your fabulous writing. Thanks for sharing your journey and reminding us about this privilege of life.

    As for the wanting bed time to happen quick enough; I can relate with that feeling if ingratitude for not enjoying precious moments that one can’t get back. It must more poignant for you considering what you’ve been through.

    May you keep seeing His miraculous hands in your lives. #CommentLuv

    • Louise
      Author
      July 28, 2015 / 9:51 pm

      Thank you – I am so thankful for getting to where we are and I think I’ve got a little better lately at stopping and remembering to appreciate those precious moments more x

  9. Rachel Sazama
    July 16, 2015 / 4:47 pm

    Absolutely love this, thank you for writing and sharing this. It’s like you have taken the words right from my mouth. My son was born with HLHS and has undergone 2 open-heart surgeries and a heart transplant. I have shared this on my Facebook page because people who haven’t lived it, just don’t get it, but like you said it has made me a more compassionate and better person.

    Thank you,
    Fellow Heart Mom,
    Rachel

    • Louise
      Author
      July 16, 2015 / 6:25 pm

      Thank you Rachel – it is hard sometimes to explain what the journey is like to those who haven’t lived it and I’m glad you enjoyed my post and that it helps illustrate the journey to others. My daughter also has HLHS. Hope your son is doing well x

  10. Jennifer Brooks
    July 16, 2015 / 5:30 pm

    Hi Louise

    I remember you, you were in the same time as my son Jayden in December 2011. Im so glad everything went well for her and you also have a living miracle! xx

    • Louise
      Author
      July 16, 2015 / 6:26 pm

      Thanks Jennifer – there were quite a few of us in around that time weren’t there. Not the best place to spend Christmas but at the time we were just so thankful that we were able to be together. Hope Jayden is doing well x

  11. louise
    July 16, 2015 / 7:16 pm

    Beautifully written, nothing can ever explain how it feels to be a heart parent but this blog has really helped to try and show friends and family how we feel. My son has just had his 4th surgery and hopefully the last one for a few years and at only 6 months his doing amazing to recover so well. I hope your daughter is doing well. Thank you for writing down how we all feel.

    • Louise
      Author
      July 17, 2015 / 7:05 pm

      Thank you Louise, so glad to hear that your son is doing so well after his surgery and hope that he won’t need another one for quite some time x

    • Louise
      Author
      July 17, 2015 / 7:11 pm

      Thank you Don – I’ve also kept a blog of my daughter’s journey and it helped immensely during those days in hospital. Just had a look at Leon’s blog – love his bear and the photos of him with Batman on his birthday, hope he is continuing to do well x

  12. Tracy
    July 17, 2015 / 8:35 am

    I have never been able to put it into words myself but from one heart mummy to another this is beautifully written and so exactly right. I hope your little one is doing well and long may that last. xxx

    • Louise
      Author
      July 18, 2015 / 10:27 pm

      Thank you Tracy – she is doing well at the moment. Hope your heart warrior is also doing well x

  13. Pat Martin
    July 17, 2015 / 12:54 pm

    Thank you for the wonderful article. I too can relate to everything you said. My heart baby is 17 (and was diagnosed with TGA, VSD, ASD and pulmonary stenosis,) and is an amazing young woman. She is athletic, smart, funny and getting ready for grade 12! She still has some heart issues to contend with but is doing great! I wish I had taken more pictures and wrote my thoughts down when everything was happening. But, as you probably know, you are living in the moment and sometimes just trying to get through the day. Hope everything continues to go well for you and your family! Miracles do happen!

    • Louise
      Author
      July 18, 2015 / 10:29 pm

      Thank you Pat, so glad that your daughter is doing so well – my heart baby is 4 so hearing stories about young adults always helps to give me hope for the future. I hope all continues to go well for your daughter and wishing her the best of luck for starting grade 12 x

  14. July 17, 2015 / 7:04 pm

    Wow, just wow, what a beautiful post, I could feel all the emotions welling up as I was reading this. It must be such a hard thing to deal with (stating the obvious here!) but the fact that you and your beautiful family have come out of it the other side, stronger, is an inspiration.

    We are having some worries our selves at the minute, my cousin has unfortunately had to have an MRI scan this week to find out how bad things are and what and when surgery will be. She had done really well to make it to 22 without more surgery I think she was 7 or 8 the last time? This is worrying enough! I can’t imagine going through it as a parent I really can’t.

    • Louise
      Author
      July 18, 2015 / 10:31 pm

      Thank you Jenni – so sorry to hear that your family are having worries with your cousin’s heart and hope that all goes well with the surgery when it takes place x

  15. Elspeth
    July 17, 2015 / 8:40 pm

    I just wanted to say how brilliantly written this is. It perfectly describes the tortuous journey of being a heart parent, I found myself nodding in recognition with a big lump in my throat! Thank you for sharing and explaining it so well. My Son is only 8 weeks old is currently stable but if I’ve learnt anything it’s to take each day as it comes and not take the future for grantee.

    • Louise
      Author
      July 18, 2015 / 10:34 pm

      Thank you Elspeth – I think learning to take each day as it comes is probably the biggest lesson we learn as heart parents. So glad that your son is currently stable and hope that all goes well for him. x

  16. Sherry Factor
    July 17, 2015 / 9:46 pm

    Louise,

    I am not eloquent, and according to my husband I use 70’words when I could have used 7, but I wanted you know how beautifully your writing is.

    I am a 27 year cardiac mom. We were told day three, that he was probably going to lose his battle within months! That was not to be the last time we heard those words!

    He is sitting on the couch next to me playing on his iPad and driving me crazy….NEVER EVER give up, and just keep breathing. Sometimes it’s the only way to keep going. It’s a roller coaster of a life, but SO COMPLETELY worth the ride!

    • Louise
      Author
      July 18, 2015 / 10:38 pm

      Sherry, thank you so much for your lovely comment and your words of encouragement. I am so glad that your son has defied medical expectations and is doing so well, long may it continue! x

  17. Nancy lee
    July 18, 2015 / 3:11 pm

    Louise,
    Beautifully written….
    As I was reading – it described a lot, of what I had experienced 30 years ago ~ as a “Heart Mommy”, Then experienced AGAIN – 5 years ago, as a “Heart Grandmother”!! Twice in a lifetime is unfair…
    My Daughter, and (her baby) – my Granddaughter.
    FYI: Not my sons, or my Grandson – Interesting!
    I highly recommend that every “Heart Family” ask to be screened by your hospitals GENETICS Department.
    My love, thoughts and prayers are with you, your baby and your family.
    ~ Nancy ~

    • Louise
      Author
      July 18, 2015 / 10:41 pm

      Thank you Nancy – so sorry that CHD has struck twice in your family. I hope both your heart babies – your child and your grandchild – are doing well x

  18. July 18, 2015 / 10:20 pm

    Beautiful post, Louise – so many emotions and worries involved for a new parent. You described the experience so well! It must have been a tough one to write xx

    • Louise
      Author
      July 18, 2015 / 10:42 pm

      Thank you Becky – it was tough to write but also very cathartic too x

  19. Dominique Parmee
    August 6, 2015 / 4:36 am

    This is so beautifully written and so true. My baby is 26 years old and doing so well – it was difficult to be given someone as precious as her but we’ll worth it – I would never change my Clairo and for those who are afraid it may happen again I had two children after Claire whose hearts were 100% healthy -keep strong and call on me if you need anything xxx

  20. Katie @mummydaddyme
    August 14, 2015 / 8:24 am

    I edit Tots100 and I was just putting together a post for Amber from Goblin Child as she has chosen yor photo for our photo Friday comp, but when I came on to find your blog link I couldn’t help but read a bit about you and then your story about your brave little girl. Half an hour later and I am still reading. You write absolutely beautifully. xx

    • Louise
      Author
      August 14, 2015 / 9:25 pm

      Katie, thank you so much for your lovely comment – that’s really made my day 🙂

  21. Charlotte
    August 17, 2015 / 7:01 am

    I am not a heart parent but heart patient. That post was lovely. My mum didn’t have the Internet or forums she was on her own. The heart is strong muscles and will go forward as best it can. I hope that what I went through nearly 30 years ago has been able to help teach the docs of today how to treat your precious beings. I hope you have many years ahead and wonderful memories to make. Good luck and enjoy. Your little girl is gorgeous and well done on the truly powerful post. X

    • Louise
      Author
      August 20, 2015 / 9:30 pm

      Thank you Charlotte – it must have been hard for your mum – being able to connect to other heart families is one of the wonderful things about the world wide web. Hope that you are doing well and thank you for your lovely comment x

  22. Victoria Monk
    August 22, 2015 / 4:21 pm

    I became a heart parent on the 17th June 2015 and you have absolutely summed up exactly how I felt when my baby was born. Your story gives us all hope for the future. Each time I look at my little boy and the scar on his chest I am reminded how lucky I am to have him. You are an inspiration to me, thank you for sharing your story about your brave little girl. God bless you and your family xx

    • Louise
      Author
      August 26, 2015 / 6:44 pm

      Thank you Victoria for your lovely comment, hope your little boy is continuing to do well. These little heart warriors of ours are amazing aren’t they? Wishing you and your family all the best for the future x

  23. Marilyn Morales
    November 18, 2015 / 5:28 pm

    When I read your post. It really touched my heart. It was like all my feelings were expressed in every word you wrote. God bless you and your family. I am a heart warrior mom. My son 16 years old now . But, at age 2 survived 2 open heart surgery in one day. Everyday I am thankful of this miracle. Thank you for sharing.

    • Louise
      Author
      November 22, 2015 / 10:58 pm

      Thank you for your lovely comment Marilyn. Hearing stories from heart moms with older children than my daughter always helps to give me hope for the future too. Hope that your son is doing well.

  24. December 3, 2015 / 11:37 am

    What a beautiful and touching post! Thank you for sharing a bit of your life.

  25. Jess
    February 9, 2016 / 11:32 pm

    Louise you summed it up perfectly.. totally the way we feel especially the running and hiding I often feel like that x x x x x

    • Louise
      Author
      February 9, 2016 / 11:43 pm

      Thank you Jess – I still have moments of feeling like I want to run and hide too – especially when I start thinking about the next surgery x

  26. Rochelle
    September 29, 2016 / 7:05 pm

    So accurate them first few lines brought a tear to my eye and left a lump in throat . hearing those words at my 20 week scan will stick with me forever ❤

    • Louise
      Author
      September 30, 2016 / 11:09 am

      They are definitely words that stick with you forever aren’t they? Hope your heart warrior is doing well x

  27. Leah Ferguson
    October 7, 2016 / 4:51 pm

    I understand this all so well. I lived most of this except that my baby never got that life saving surgery. She was born ar a time when they did not know so much about this if anything. I was told that she had a different defect, After she dided in a brain surgery due to an abcess because of the heart, they found what was wrong with the heart. The doctor told me, “I don’t understand how she ever lived”. God had his reason is all I know. I would have fought the world if it would have saved my child. She was so very special and loving. Dawn was born om July 17th of 1967 and died on May 5th of 1975. I feared every day that I may loose her yet cherished every second that I had been given with her. Even though I miss her still today, I know where she is and she is well and happy with Jesus. All she ever wanted was to run and play with the other children. Through all she went through, she never complained. Dawn taught me so much and is the reason that my faith is so strong today.

    • Leah Ferguson
      October 7, 2016 / 4:54 pm

      My eyes are really bad. Please excuse the bad typing. I can hardley see this keyboard.

    • Louise
      Author
      October 10, 2016 / 7:12 pm

      I am so sorry for the loss of your daughter. That feeling that we would fight the world if we could save our children is one I am sure many parents can relate to. There is so much that can be done today to help children with heart conditions survive – I am so sorry it wasn’t available when Dawn was alive. Thank you for sharing your story xx

  28. October 26, 2016 / 11:31 am

    You and your family are very strong. Have faith, you will get through it all. xxx

  29. Donna Giles
    February 7, 2017 / 9:01 pm

    Lovely Louise.

    Because my children have their own health needs, I can identify with this from a parent’s perspective completely.

    • Louise
      Author
      February 8, 2017 / 10:56 am

      Thank you Donna x

    • Louise
      Author
      February 8, 2017 / 6:25 pm

      Thank you so much Lucy x

  30. Autumn
    September 26, 2017 / 5:33 pm

    This described so much of my life the past two years. Hopefully my daughter doesn’t have to have surgery again but they can’t say for sure that everything is completely fixed. She had a coarcation of the aorta and a large vsd. Both have been repaired. She also has a small asd that they can’t say is closing but it hasn’t grown much of any so no surgery as of yet

    • Louise
      Author
      September 27, 2017 / 9:26 am

      It is an emotional rollercoaster isn’t it? I hope that your daughter will manage to avoid the need for another surgery x

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