Mother raises awareness of cardiac disease baby death

Musarrat Parveen and her husband Muhammed Hanif found out baby Ahmad-Fateh had a heart defect while she was pregnant.

Doctors advised the pair they would assess if Ahmad-Fateh, who had a hypoplastic left heart, could be operated on when he was born.

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However, the baby’s heart in his right chamber began to deteriorate and blood was not flowing as it should have been, making an operation unviable.

He died on August 17, at a hospice, after a natural birth. Now Musarrat wants to raise awareness of the disease of the condition by sharing her story.

Musarrat Parveen and her husband Muhammed Hanif with their daughter Zahra and baby Ahmad (Image: Heartbeat charity)

Talking about her hopes to fall pregnant with a second child, Musarrat said she had almost given up hope due to difficulties suffering from endometriosis.

However, in the winter of last year, Musarrat discovered she was pregnant. and under the care of Stoke Mandeville Hospital being closely monitored.

But during a routine scan, things changed. Musarrat said: “I still remember driving to the scan, I thought it would be very routine.

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“I even went by myself as my husband was at work. I was so happy to be pregnant, I sang songs in the car. I cried happy tears as the sonographer scanned me.

“It wasn’t until I realised it had been quite a long time that she was scanning me and when she stood up and said she needed to get another doctor- that’s when I knew something wasn’t right.”

Musarrat’s baby was diagnosed with hypoplastic left heart. Musarrat and Muhammed were devastated.

“My world came crashing down,” she said. “They said it looked bad, and that it was at the extreme end of the scale.

“To be told my baby only had the right side of his heart was devastating. But I wanted to continue the pregnancy.

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“After Oxford we were referred to University Hospital Southampton…and were introduced to the palliative care team.”

Baby Ahmad-Fateh (Image: Heartbeat charity)

As Musarrat’s due date crept closer, a final scan revealed there was another problem. The baby’s heart, in his right chamber, had also deteriorated and blood was not flowing as it should have been, decreasing the baby’s chance of a positive outlook.

“That was the biggest blow”, Musarrat said. “Finding that out was our last shred of hope, and that was being taken away. It was then that the reality really hit me, and that all sense of control was taken away.”

Ahmad- Fateh was born on August 11 this year, weighing 7lb9oz.

“He was so beautiful,” Musarrat said. “My husband said he had my button nose and he had a little bit of dark hair and looked a lot like his sister. So, so beautiful.”

But because of Ahmad’s heart complications, he was immediately taken to PICU and given oxygen. After further assessments, it was decided an operation was not viable.

The palliative care team took time to sit with Musarrat and her husband to find out how they could best make memories with Ahmad.

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They were to have family visit Adhmad-Fateh and celebrate his life.

“Those last two days were very special,” concluded Musarrat. “The hospice let my whole family come and go- they could have restricted this but they were amazing - Ahmad was so surrounded by love.”

For more information, or help/advice, visit heartbeat.co.uk