‘It’s so ironic’: Girl ‘born with broken heart’ on Valentine’s due to rare condition celebrates fifth birthday this year

A girl who was “born with a broken heart” on Valentine’s Day due to a rare heart condition is celebrating her fifth birthday this year.

Jayna Bhudia’s daughter Radhika was born with a condition called Tetralogy of Fallot – a group of four structural abnormalities within the heart that occur together – on February 14 2020.

Jayna, 39, a business analyst from north London, said this was “ironic”, adding that she was “meant to be born the day before”, and Radhika had open heart surgery at Great Ormond Street Hospital (GOSH) at two months old.

However, with rehabilitation and physiotherapy, she has since recovered and recently started primary school, where she talks about her “bravery zip” scar from heart surgery.

Although Radhika will need to undergo another heart surgery in future, she is excited for her fifth birthday party, which will be unicorn-themed.

Jayna told PA Real Life: “We ask Radhika, ‘What happened to you?’ And she says, ‘I was born with a broken heart and then GOSH fixed it’.

“It’s so ironic and we can joke about it, but when people say things like, ‘Oh, I’m heartbroken’, it always makes me think, literally, her heart is broken.

Jayna said that she and her 40-year-old husband Aekash have a healthy 10-year-old son called Madhav, so she “didn’t expect anything out of the ordinary” during her second pregnancy.

However, during her 20-week scan at Barnet Hospital in London, she said she was informed that Radhika had Tetralogy of Fallot, which is a form of congenital heart disease.

Jayna was transferred to receive care at University College London Hospital (UCLH) and Radhika was born via a planned C-section on February 14 2020.

Radhika was born with signs of cyanosis, where the skin or lips turn blue or grey, and she spent three days in the neonatal intensive care unit (NICU) at UCLH before being discharged.

The family were managing her cyanosis symptoms at home but Jayna said it was “traumatic” to see her “going blue whenever she cried”.

Jayna continued: “We were monitoring her oxygen levels at home using an app and a little sock, and I could see that it was dropping gradually.

According to NHS guidance, if someone records blood oxygen levels of 92% or less, they should attend their nearest A&E as soon as possible or call 999.

Jayna called NHS 111 and an ambulance blue-lighted Radhika to Barnet Hospital, before she was transferred to GOSH for further treatment.

She then underwent “intensive” open heart surgery at two months old in April 2020 and her parents were called in to say their goodbyes.

“The doctors said, ‘OK, we want you to pick her up from the bed and give her a cuddle and give her to us’, and I said, ‘No, I can’t do that’,” Jayna explained.

Radhika experienced “ups and downs” post-surgery, but she recovered well and her oxygen levels started increasing again.

However, just before her first birthday, Radhika choked and this led to further diagnoses.

“When she choked, she went blue and she started foaming and I had to give her CPR,” Jayna said.

Doctors discovered that Radhika had decreased muscle tone, known as hypotonia, and she had hydrocephalus, a build-up of fluid in the brain.

Radhika qualified for whole genome sequencing testing, which showed that she had a rare genetic disorder called PIK3CA.

“It is very rare, and it explains the group of conditions that Radhika has – her heart condition, hydrocephalus and the developmental delays,” Jayna said.

This left her with the symptoms of a stroke and she was unable to walk and had slurred speech.

“The left side of her body had gone completely numb, mimicking mild stroke symptoms,” Jayna explained.

“I just went on a crazy mission to rehabilitate her.”

She has continued to have follow-up appointments at GOSH, and Jayna said the Play team, chaplaincy service and family accommodation, which are all funded by GOSH Charity, have been “fantastic”.

She practises Hinduism and said her faith has “played a massive part” as well, with her local temple “praying for Radhika all this time”.

“It was amazing to know that the whole community was coming together,” she said.

Although Radhika’s heart is “deteriorating again”, meaning she will require another operation, she is currently “thriving” and enjoying life.

Jayna said Radhika’s journey will never be “plain sailing” but they are learning to “live every day, one day at a time”.

“She has a large scar and she says, ‘This is my bravery zip’,” Jayna said.

“She’s so brave, all the children at the hospital are. The children are honestly superheroes.”

GOSH Charity has launched its Valentine’s Day appeal to fund a new cardiac output monitoring kit at GOSH, which will help thousands of children like Radhika.

To find out more or donate, visit: gosh.org/heart.