Saturday 20 July 2019

'I just wanted to hold her' - Mum of baby who died at just 8 weeks old

Rahma Musa was born with Edward's Syndrome.
Rahma Musa was born with Edward's Syndrome.
Geraldine Gittens

Geraldine Gittens

Arafa Musa lost her daughter Rahma two years ago at just eight weeks old.

Rahma was born with Edwards Syndrome, a genetic disorder caused by an extra 18th chromosome.

She was also born premature at 34 weeks, needed to be tube fed and needed medication to help with her breathing and circulation.

Arafa still remembers the moment she heard that her baby would not survive long past the womb.

“It was Friday and at 3.45pm they called me and said ‘Arafa I have bad news for you… Your baby has a medical condition that will limit her life. Maybe she will be born, maybe she will be stillborn, or be alive for 30 minutes after she is born.”

“My husband came and took the phone from me. I can’t remember much after that; I just remember my husband bringing my kids home from school… later we googled Edward Syndrome."

"At that moment... I’m in my 28 weeks, I have no family around me, I felt like the circle of life stopped in front of my eyes.”

She continued: “They told me there is nothing you or your husband did, it’s the chromosomes. It happened in the first week of the pregnancy.”

“It was hard. In St Luke’s Hospital in Kilkenny there is a great midwife called Margaret Ryan. She was there for me, holding my hand. They have a very beautiful room there for mommies just like me. Even they (the staff) cried with me.”

“Rahma was kicking and moved playfully. She moved as much as she could. I tried to touch my belly and I’d ask her ‘are you going to stay with us?’”

When Rahma (the Sudanese name for Grace) was born on December 9, Jack and Jill nurses took over her care.

“I just wanted to hold her," Arafa, who lives in Carlow and hails from Sudan, said. "That was my feeling, I didn’t want to leave her. But I remember it was a dark winter’s night and the nurses just came and knocked at my door and came into our home. I was sitting down, holding her for eight hours all during the night and the nurse sent me to my room for a rest.”

“'Will you please have a rest,' she said. And she held Rahma all through the night - all through the night - she didn't put her down.”

“They talked to me and cried with me, because I was down. They changed my life."

“I just feel I’m a very special mum to have Grace in my life,” she added. “She was so special in lots of ways."

Rahma died at 6.30am on February 1, 2017, having come into the world at exactly the same time two months earlier, an omen that Arafa holds dear.

Last September, Arafa enrolled in a pre-nursing course, and she is now studying intellectual disability nursing in Trinity College Dublin.

"I thought I want to change. I want to make someone feel the same way they (the Jack and Jill nurses) make me feel, and I decided to be a nurse. They are so special. They are half human and half angels.”

Joanne Doyle, early liaison nurse with Jack and Jill, was involved in Rahma's care from the beginning.

"When Rahma died, Arafa said I so wish I could have my mother’s arms around me."

"She was always so thankful to us because she often said that if she was in her own country, she wouldn't have gotten this help. When she met Jonathan Irwin, the Jack and Jill founder, she gave him this kiss right on the centre of his forehead, a significant honour in her culture. 'Thank you so much,' he said, 'I know very few people would receive this honour, thank you for doing it'."

"She’s an amazing lady that she’s gone on to do nursing - to have that determination... it’s amazing, I can’t believe she’s done all of this."

“For me as a liaison nurse it’s lovely to be able to go to the family home and offer something tangible. The job is so sad sometimes but it’s an honour to be there at those times for a family as well.”

The Jack & Jill Children’s Foundation provides home nursing care to children from birth to five years of age with severe to profound neurodevelopment delay and respite to their families.

The charity also provides end of life care to children going home to die, regardless of their named or unnamed medical condition.  Jack & Jill has supported 2,300 children and their families since 1997, with 355 children currently under its wing today.

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