Nottingham parents have issued a message of hope after their child was diagnosed with a rare and 'devastating' disease. Shagufta Asghar, 35, and her husband Derek Deidrick, 46, from Nottingham, were told their seven-week-old son Raheem had the rare liver disease biliary atresia in August 2021.
Raheem's mum spoke of their fright as hospital medics rushed to diagnose and treat the baby's condition, which results from a blockage in the tubes that carry bile from the liver to the gallbladder, last year. “This came shortly after an earlier diagnosis of a heart condition and rare chromosome deletion so it was really devastating,” Shagufta said.
"When he was born the following day a midwife said he looked very jaundiced, but I had no idea anything was wrong. She told me to look out for signs like him not waking up for a feed, so I took him to A&E when that happened.
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"At that time it was quite normal for him to be jaundiced, but after two weeks he had further blood tests done to investigate. He was in hospital for two weeks, which gave us a lot of fright and they had contacted the hospitals in Leicester, Sheffield and Birmingham - which in itself told me there was something majorly wrong with my child.
"People didn't know the answers, and when a different hospital is involved you know it is serious. There was the fear of the unknown as well as the local hospital couldn't help without consulting others, as it is so rare and specialist.
“Although Raheem received excellent monitoring and care from the start, both from Queen's Medical Centre and the specialist liver unit at Birmingham Children’s Hospital, the nature of liver disease in babies meant that he had to undergo many invasive tests and hospital stays.
"This was very upsetting for him and for us as parents. I spent long periods in hospital with my new baby, witnessing his distress, while Derek would be caring for our two other sons, Kameel who is now five and Shimmy, now eight, who couldn’t understand why mummy wasn’t at home.
“When I did finally come home, Raheem’s discomfort due to his liver condition meant he wanted my attention at all times, which made it very difficult to give his brothers the time and attention they needed. In addition to all the worry I had about Raheem’s health, I was extremely stressed, felt very isolated and found it difficult to cope."
Raheem was placed on the waiting list for a liver transplant in April this year, and after his parents' hopes had been raised and dashed three times, the family were told a suitable liver had been found. Raheem’s transplant finally went ahead when he was just 15 months old in October.
Shagufta, who saw the story as a sign that things can always get better, added: “The transplant has been life-changing - we are so grateful to his donor family. He has a lot of catching up to do but I know he will get there. He is much more engaging and has developed a very cheeky personality! For me the knowledge that my baby is no longer in pain and will be able to play with his brothers is the greatest gift anyone could have given me.
“We do not celebrate Christmas ourselves but I hope that our story makes other people’s Christmas a bit better by sharing hope that things can get better. I also hope that other parents in our situation will reach out to CLDF for help and realise they don’t have to go through all of this alone.”
Shagufta received help and support from the Children’s Liver Disease Foundation (CLDF) during Raheem's treatment, after reaching out to the charity. “I wish I had known about them sooner. I think all local hospitals should introduce parents to CLDF when liver disease is suspected so that they can benefit from some knowledge and understanding. It really helps to know you’re not alone,” she added.
Rebecca Cooper, chief executive of Children’s Liver Disease Foundation, said: “We are here for every UK family affected by liver disease in their child. We provide information and emotional support, funds for research and a voice for all those affected. We’re delighted to hear that Raheem’s transplant has been a success and would echo Shagufta’s call for any parent in her situation to come forward. We are here to help.”
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