Irish Roots, Family Shoots: Our Story

18/01/2024

Arlo Bridger Spang entered the world on December 11th 2023 🥰🥰🥰

18/11/2023

It's never how things should go 😭 ten months old. That's all she got

19/10/2023

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18/10/2023

This was my favourite baby grow on Alice at the time. Unfortunately she also died in it so it's painful to look back at these pictures where we were so happy. We didn't know she'd die so soon or in that particular outfit... 🥺🥺🥺

15/10/2023

We miss you so much Alice Aurora 💔

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12/10/2023

There's less than 24hrs between these pictures. That's cardiomyopathy, that's end stage heart failure and it's completely unpredictable 💔

11/10/2023

08/10/2023

Pregnant with Alice 5 year's ago 🥺

06/10/2023

Straight out of bed hair! Too cute was Alice 🥰💓💕💔

01/10/2023

This would be the result of trying to get her off Milrinone and off it for 5 days had catastrophic consequences 😞 I'm sorry Alice 💔

30/09/2023

I updated her wardrobe with 9-12 months clothes! What's 3 months I thought to myself. This size I thought I'd never get to buy her and I started to dream of her first birthday coming up in January. Because she was amazing Alice and she kept beating the odds......😞💔

28/09/2023

As I prepare to welcome another beautiful addition to our family, I find myself reflecting on this incredible journey called motherhood. It's a path that has led me through moments of immense joy and profound loss.

In 2019, my world was forever touched by the arrival of my precious Alice. Her time with us, though far too short, was filled with an abundance of love and cherished memories. Her absence left a void that words can hardly describe.

Ten months after Alice's passing, I was blessed another pregnancy and I went on to have Alistair. He's a bundle of endless joy, a reminder that life can still be filled with laughter and light, even in the midst of grief.

And now, in 2023, I'm on the verge of welcoming another precious boy into our lives. Each child is a miracle, a unique soul with their own special gifts. My heart is full of love for my boys, and I'm incredibly grateful for them.

Yet, I can't help but acknowledge the bittersweet ache that comes with the knowledge that this will be my last pregnancy. I had hoped for a daughter, not out of dissatisfaction but out of the desire to experience that unique mother-daughter bond and to share the joys of dolls and dresses.

I want to emphasize that my love for my boys is boundless, and I'm grateful for the chance to be their mother. But it's okay to grieve the dreams that will never be realized, to acknowledge the complexity of our emotions, and to yearn for what might have been.

This journey has taught me that motherhood is a tapestry of emotions, woven with love, grief, joy, and longing. So, as I await the arrival of my second son, I'm embracing the fullness of this experience, with gratitude for the love that fills my world....💞

26/09/2023

It was a lovely day with Alice. She seemed to be coping well with the drop in Milrinone and we were getting hopeful about going home! 🥰🥰🥰💔

24/09/2023

Sat next to Alice's cot I took this picture and thought to myself it should be the high chair at home. Not all this here in hospital 😔💔I still thought she'd get a heart, I thought we'd be home together at some point.

Because on TV they always get their transplant right? So it might be last minute but we'll get it too! But TV never shows the ones who lost and they are the majority actually 🥺

23/09/2023

It was a Monday when I was alone with Alice so I took lots of pictures for Daddy and I took lots of pics because I was scared. Somehow it helped sending them to Daddy then I felt less alone there

22/09/2023

It was a Sunday and I had been home. I also did some shopping for her and bought some real clothes too because we were weaning off Milrinone and then she could wear anything without that line coming from her. If it was too close to her chest she'd pull on it and play with it not understanding how dangerous it was.

So until we could be without it we were stuck to clothes that had a place for it to easily come out like sleep suits and dungarees with poppers. I hated buying boy clothes for her and could never have imagined there would come a time when boy clothes is all I could buy 💔

21/09/2023

He was giving me a hug while I was singing to him before bed. This is from our holiday 💞 I love you too Alistair 😘

21/09/2023

I love this picture! When I first looked at it this morning I saw Alice twice 😂 I actually didn't think they looked alike at all but now looking back I can see they look very alike! 🥰🥰🥰 my beautiful babies Alistair and Alice 🥰🥰💞💗

20/09/2023

4 years ago my house didn't feel like a home. I was living in a hospital with Alice and came home for the first time in 4 months. I packed up my winter clothes to move back to Dublin and continue the wait for a heart with Alice....

15/09/2023

Alistair did a self portrait at preschool 🥰

12/09/2023

Alistair, Mom and baby brother in one picture 🥰 Alistair couldn't feel his brother kicking him 😂

11/09/2023

Alice had an adult sized Stoma due to the size it became after it blocked up. How her bowel didn't burst we'll never know but eternally grateful it didn't as things could have been so different.

She coped very well with it and it healed fast. It did shrink over time and by the time she was nearing the end I think it was ready to prolapse which isn't good either. There was no good path for poor Alice 😢

10/09/2023

In this picture Alistair is wearing the last of the clothes that Alice also wore. Alice wore this spotty cardigan twice but Alistair got more wear out of it. I had a connection and was sad it was the last one 😞

10/09/2023

Our Genetic Journey:

I want to address a question that's been on some minds – the genetic factor that plays a significant role in our family's life. You see, I carry a particular gene, MYH7, which means that all our children need to undergo regular heart check-ups every two years to ensure their well-being.

Understanding the Genetic Landscape:

When Alice came into our lives, she faced severe cardiomyopathy, a condition related to her heart muscle. Genetics played a role, as she carried a mutation in the TPM1 gene, which is exceedingly rare and, unfortunately, vital for heart health. This gene had a missing part, and the consequences were profound, affecting her heart's function and chances of survival.

A Glimpse into the Odds:

Now, some have questioned whether it was reckless to have more children knowing about this gene. I want to address this concern directly. We consulted with genetic experts who informed us that the likelihood of another child inheriting both the MYH7 gene and experiencing a mutation in TPM1, like Alice did, is less than 1%.

A Shared Gene in Ireland:

Furthermore, we learned that around 20% of the Irish population carries the MYH7 gene, a gene I have a duplicate of. It's not uncommon, and many individuals lead healthy lives without complications related to it.

Responsible Parenthood:

I want to emphasize that our decision to expand our family was made with care and consideration. We are vigilant about our children's health, and regular check-ups are part of our commitment to their well-being. Our love for them and our determination to ensure their healthy futures is unwavering

A Hopeful Perspective:

As we navigate this complex genetic landscape, our goal remains to raise awareness about CHD and to advocate for early detection and intervention. We appreciate your support and understanding as we share our journey with you.

Thank you for being a part of our lives and for your unwavering support!

10/09/2023

Hello everyone, I'm Majella, and I'd like to share our family's journey with you. I'm currently 41 years old and expecting a baby boy, due on December 21st. My husband, Jan-Bart, is Dutch, and he moved to Ireland in 2002 after several years of a long-distance relationship with me.

Our Unexpected Journey to Parenthood:

Parenthood wasn't something we initially planned. We were enjoying life as a loving couple, but as time went on, we felt a strong desire to expand our family. We had so much love to give, and we wanted to experience the joys and challenges of parenthood together.

The Arrival of Alice:

In 2019, our dreams came true when our precious daughter, Alice, entered our lives. It was a moment filled with immense happiness and excitement. We were embarking on a new chapter, one filled with hope, laughter, and countless beautiful memories.

A Rollercoaster of Emotions:

But life had its own plans for us. Alice's journey was both a blessing and a test of our strength. She needed a heart transplant, and while we fought alongside her, the wait for a donor proved to be an agonizing journey. Tragically, Alice passed away at the tender age of ten months while waiting for that life-saving gift.

Raising Awareness for CHD:

Our experience with Congenital Heart Defects (CHD) opened our eyes to the challenges many families face. We want to raise awareness about CHD and the importance of heart transplants in babies. It's a cause close to our hearts, and we're committed to making a difference.

Alistair's Arrival:

In 2021, our family welcomed a ray of sunshine when our son, Alistair, was born. His arrival brought both joy and healing to our lives. Alistair is a constant reminder that even in the face of adversity, there is hope and the strength to move forward.

A New Beginning:

Now, as I'm pregnant with our second son, due this December, we're filled with anticipation and gratitude. Our journey has been a rollercoaster of emotions, but it's shaped us into the resilient, loving family we are today.

Join Us in Making a Difference:

We invite you to join us on this journey, to learn more about CHD, and to consider becoming an organ donor. Your support means the world to us, and together, we can raise awareness and make a positive impact on the lives of other families facing similar challenges.

Thank you for being a part of our story and for sharing in our joys and sorrows. We look forward to the adventures that lie ahead and to continuing this journey with all of you.

With love,
Majella