Reggie’s Story

Reggie was born with transposition of the great arteries (TGA). After initially doing well, he became very unwell after his surgery. After a long and brave fight, he tragically passed away at six weeks old. His devastated mum, Shannon, shares their story:

My beautiful little boy, Reggie, was born with a serious congenital heart defect called transposition of the great arteries (TGA).

I was induced at 38 weeks pregnant because of Reggie’s heart condition. When he was born, he turned a little blue. It was frightening to see my newborn baby like that, but the medical team were prepared for him and knew that he needed specialist care.

Reggie had a balloon atrial septostomy, which helped improve the blood flow and oxygen around his body. The following day, he was transferred to Great Ormond Street Hospital for specialist heart care.

At first, Reggie was doing absolutely fine. We were constantly praying for our son, and I was by his side every step of the way.

When Reggie was seven days old, he went into surgery to have have the switch (open-heart surgery) done. He was down there for a very long time, and I believe he struggled.

When he finally came back, he was on ECMO (life support), and our little boy was fighting. But he come off ECMO two days later and kept fighting, being the hero that he is.

However, five weeks later things started going down hill for my son.

I was there through thick and thin. I stayed with my baby through the good days, the bad days, the frightening moments and the moments when we were desperately hoping for better news.

No matter how difficult things became, I was there holding onto him and fighting for him, alongside his dad.

Reggie became swollen and puffy. For many weeks, he struggled with fluid building up in his body.

Sadly, Reggie became very unwell.

He developed a serious infection. His little body had already been through so much, and his organs began to struggle. His kidneys began to fail, along with other complications.

For a very long time, the doctors couldn’t close his chest because of how swollen and unwell he was. Eventually, they were able to close the part around his heart, but they couldn’t close the other part because the skin had shrunk and there wasn’t enough to close it properly.

Then, heartbreakingly, Reggie developed another major infection.

By this point, my little boy had fought for so long. He went through more in his six short weeks than any baby should ever have to go through. Eventually, we were told there was nothing more that could be done.

Sadly, my beautiful Reggie lost his life at just six weeks old.

I never left him. I was there until the very end, just as I had been there from the beginning.

Reggie wasn’t just a TGA baby. He wasn’t just a heart defect or a medical case.

He was my son.

He was my beautiful little boy, and his daddy and I loved him so much. We created such a bond in a short period of time.

I am sharing Reggie’s story because I want other mums and families to know about TGA and the reality that some families can face after a diagnosis.

Finding out that your baby has TGA can be terrifying. You suddenly enter a world of hospitals, procedures, surgery, intensive care and medical terminology that you never imagined you would have to understand.

I want other parents to ask questions, speak up when something doesn’t feel right, and make sure their concerns are heard.

And most importantly, I want them to know that behind every diagnosis is a real baby, a real family and a mum who would do absolutely anything to save her child.

Reggie fought so incredibly hard.

And his dad and I fought beside him every single step of the way. All we wanted was our little boy to come home.

Reggie is our little solider and he will always be our soilder.

He did so well, fighting for so long, and now he can finally rest in peace.

Reggie will never be forgotten.

Our hero!

Born 7/7/26
Died 19/8/26