Musarrat Parveen and husband, Muhammed Hanif from High Wycombe went through what no family should ever have to go through- losing their baby. Baby Ahmad-Fateh was just six days old when he died.
It was a difficult journey for Musarrat from the start, as it took longer than expected to fall pregnant with her second child, Ahmad. Musarrat suffers from endometriosis and had almost given up hope on having another child.
Musarrat said: “We had our daughter Zahra and we wanted to give her a sibling. I also didn’t want to leave it too long so we could have a close age gap.”
For Musarrat and her husband, family is everything. Musarrat continued: “We are from a big family, we live with my husband’s parents and being close with everyone is really important. We really wanted another child.
“I had almost given up hope of having another child. It was becoming too difficult after each month passed to find out I wasn’t pregnant again.”
The autumn of 2022 passed and Musarrat was going to have a break from trying to conceive. Her health wasn’t at its best and she wanted to focus on feeling better. As winter came, Musarrat felt worse. She said: “My migraines were really bad. I got to the point where I thought I might have to go to A&E.”
Musarrat felt so unwell, but little did she know that she was actually pregnant. “I couldn’t believe it, I was completely in shock.” Musarrat said of the good news. Due to her endometriosis Musarrat was under the care of Stoke Mandeville hospital and was 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. 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.”
It turned out that Musarrat’s baby’s heart had a defect. After being referred to Oxford Hospital another consultant diagnosed the baby with hypoplastic left heart. Musarrat and her husband, Muhammed were devastated.
“My world came crashing down. 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. I was told the consultants would make an assessment when he was born as to whether they could operate or not. That gave me a small amount of hope. But our options were given to us to keep, abort or go under palliative care. Musarrat wanted to continue with the pregnancy.
“After Oxford we were referred to University Hospital Southampton and came under the care of Dr Rowen. We were introduced to the palliative care team, but it was too much for me to think about at that time. I wanted to focus on bringing my baby into the world.”
During Musarrat’s time in Southampton she visited the Ocean Ward and was under the care of cardiologist consultant, Dr Rowen who kept her as informed as possible.
Musarrat remained optimistic, “It was a really positive experience, we were given all of the information and made to feel like we did have some options, there was a plan in place.” Musarrat had prepared to stay up to three months in Southampton, a long way from her family in High-Wycombe.
As Musarrat’s due date crept closer, she came for another visit on Ocean Ward. At the last scan 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.”
Despite that, Musarrat concentrated on the impending birth and making plans for how she could make the most out of the time that she would have with her son.
Ahmad- Fateh was born on the 11th of August 2023. Weighing 7lb9oz, Ahmad came naturally into the world, Musarrat said he was perfect: “He was so beautiful, 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, Dr Rowen said they would not be able to operate.
The palliative care team took time to sit with Musarrat and her husband to find out how they could best make memories with Ahmad.
Musarrat said: “We wanted to be as close to home as possible. The amazing team at the hospital let my whole family spend some time with him and my biggest wish was to bring him home.”
Like all mothers, Musarrat had a special going home outfit planned for her son, and with assistance from the Neonatal Team’s ambulance the family got to take him home for a few short hours to get him to be part of the family.
It was very special for Musarrat, she said: “He got to be with his family and his older sister, Zahra. The family were all there and everyone got to hold him. We had a cake, balloons. A real celebration, there was singing and praying. I was very grateful for that.”
Ahmad then went into the Alexander Device Hospice in Maidenhead, which was close-by for the family.
“Those last two days were very special. The hospice let my whole family come and go- they could have restricted this but they were amazing. As myself and my husband weren’t the only ones grieving.
“My sisters were grieving not being able to become aunties again, Ahmad’s cousins were grieving the loss of not having a cousin. Grandparents, Uncles they were all experiencing loss.
“But throughout all of this Ahmad was so surrounded by love. Whenever the nurses would come in to do their checks they’d find him among different family members who all just wanted to spend time with him. It was very peaceful.”
Ahmad- Fateh passed away on August 17th at the hospice, peacefully, surrounded by a family who loved him.
Musarrat wanted to share her story in the hope of raising awareness of Ahmad’s condition and to offer support to other families. She said: “We had outstanding care and the thoughtfulness from the teams in Southampton and at the hospice went beyond our expectation. I was able to breastfeed, to make memories, have a photographer come and take pictures. I will be forever grateful to all of the people who looked after us and helped our family.”
Heartbeat always striving to improve every single area of cardiac care and raising awareness is also a large part of what we do. It also means we can support more families like Musarrat, Muhammed, Zahra and Ahmad.