I broke down when I was told to ‘kiss my baby goodbye’ after she was born with a broken heart on Valentine’s Day

A MUM says her baby was “born with a broken heart” on Valentine’s Day and doctors told her to “kiss her and say goodbye” before major surgery.

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

Jayna, 39, a business analyst from north London, said that she and her 40-year-old husband Aekash have a healthy 10-year-old son called Madhav, so “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.

“It is so ironic. She wasn’t even planned to be born on Valentine’s Day, she was meant to be born the day before, but it’s just how things turned out,” Jayna said.

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.

“Then one day it hit 65 per cent.”

According to NHS guidance, if someone records blood oxygen levels of 92 per cent 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 Great Ormond Street Hospital (GOSH) for further treatment.

[bc_video account_id=”5067014667001″ application_id=”” aspect_ratio=”16:9″ autoplay=”” caption=” ‘I was opening 21st birthday presents when my lung POPPED – I thought I was having a heart attack'” embed=”in-page” experience_id=”” height=”100%” language_detection=”” max_height=”360px” max_width=”640px” min_width=”0px” mute=”” padding_top=”56%” picture_in_picture=”” player_id=”default” playlist_id=”” playsinline=”” sizing=”responsive” video_id=”6368708493112″ video_ids=”” width=”640px”]

She then underwent “intensive” open heart surgery at two months old in April 2020.

Before, 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.

“I thought I was going to break down and they said, ‘No, we want you to give her a kiss and say goodbye’, and I know why they make you do that because that might be the last time.”

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

[quote credit=”Jayna Bhudia”]The left side of her body had gone completely numb, mimicking mild stroke symptoms[/quote]

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.

“The paramedics came and took her back to Barnet, and that triggered the rest of what we were going to learn about her.”

Further problems

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.

In 2023, after contracting gastroenteritis, which causes diarrhoea and vomiting, Radhika then developed cerebellitis.

The rare inflammatory condition caused her to develop “stroke-like” symptoms, leaving her unable to walk and talk properly and with 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.”

After intense rehabilitation and physiotherapy, Radhika was walking again within one month in time for nursery.

She has continued to have follow-up appointments at GOSH and has recently started primary school.

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

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

Jayna said: “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.

“We don’t really celebrate Valentine’s Day but now there’s more of a reason to.”

Radhika loves Lego and is a “happy-go-lucky” child, and she is excited to celebrate her fifth birthday on Valentine’s Day this year.

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.

[boxout headline=”Symptoms of Tetralogy of Fallot”][/boxout]