Tetralogy of Fallot: Charlie’s Story

Rebecca was told about her son Charlie’s heart condition antenatally. Here she shares their story and why early detection mattered:

(The photos in this story were taken by and belong to the author, depicting their family’s personal journey.)

Charlie was born with a congenital heart defect called Tetralogy of Fallot (ToF). We received this diagnosis antenatally at 24 weeks, following our 20-week scan. The sonographer had noted that Charlie’s pulmonary artery was quite narrow and, in his professional judgement, decided to place an onward referral to fetal cardiology. They were able to detect all four defects associated with ToF and give us the full diagnosis.

At the time, this news came as quite a shock to us, as Charlie was baby number three and my previous pregnancies had been straightforward. It was difficult to process because we did not know what to expect. Looking back, we are so thankful that this was detected early, as it gave us time to process and prepare for what was to come and ensured Charlie’s delivery was very controlled, with all the professionals involved well prepared.

Charlie spent a period of time in the NICU following birth, although, as things were well, he was soon discharged home. However, around five weeks of age, Charlie began having Tet spells, which is a common symptom of ToF. These present as desaturating oxygen levels and tachycardia.

This was very frightening at the time, although I do feel that because we had Charlie’s diagnosis, we were aware this could happen and had all the appropriate support on hand. We are from Northern Ireland and were required to travel to Dublin in the south of Ireland for any cardiac intervention, and it was clear that Charlie would need an intervention at this time.

Charlie made his first journey to Dublin in August 2025, although he was not yet ready for his full repair, so he had an RVOT balloon procedure to help open his narrowed pulmonary artery, which took place in the cath lab. Charlie recovered well, and we were able to go home.

However, he soon became distressed while feeding and, over time, had multiple admissions to Belfast, which resulted in feeding via an NG tube due to severe reflux.

Despite this, Charlie was managing to gain weight well and went to Dublin for his full repair at four months old at the beginning of November 2025. This repair went very well, and Charlie has since been doing well on the road to recovery.

This has been an extremely anxious and challenging time for us as a family. However, I came across Tiny Tickers while I was pregnant and loved hearing about other heart families’ stories. They have given me so much courage, hope and strength during this difficult time.

While getting this diagnosis and everything that has followed has been the most difficult time of our lives, we are forever thankful for the sonographer at our 20-week scan who recognised an abnormality and took action, allowing us to be in the position we are today.