'Miracle' baby born with half a heart is waiting to have life-saving surgery
A baby from Grimsby is waiting to have open-heart surgery after being born with a rare condition that caused her organs not to develop properly.
Tinsley-Rose Sisson was born on January 30 at Leeds General Infirmary with Hypoplastic Left Heart Syndrome (HLHS), a condition which affects just one in 5,000 babies.
She was born four weeks premature via emergency C-section, weighing 3lbs 14oz, and her condition means she only has half a heart.
Tinsley-Rose’s parents, Jamie-leigh Pearce and Kenny Sisson, were informed of their unborn daughter’s condition when they attended the 20-week scan – and had to make the heartbreaking decision on whether to keep their baby or terminate the pregnancy.
‘We chose to keep the pregnancy as miracles do come true and she could possibly be fine,’ says Kenny.
‘Our emotions were everywhere for a few months. We were completely broken, but with a good few chats with people who had gone through the same thing, we eventually felt more positive.’
Explaining Tinsley-Rose’s condition, Kenny adds: ‘Around 1 in 100 babies are born with a heart defect, but Hypoplastic Left Heart Syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart doesn’t form correctly.
‘The baby will have to have operations from being a few weeks old to being five years of age.’
Tinsley-Rose was also diagnosed with Mosaic Turners Syndrome, a rare condition in which cells inside the same body have different chromosome packages.
Kenny says: ‘Our support network is brilliant, from family and friends to even midwives in Grimsby calling us up even though we’re in Leeds.
‘But Leeds have been absolutely wonderful with how they look after our girl and look after us. We don’t know what support will be available for her yet as we are waiting on her open heart surgery then we may understand what’s available for her.
‘We’re all optimistic at the moment. She’s in the best place. She will have her surgery within the next few weeks – as soon as she weighs 2.5 kilos – and she’s currently 1.87 kilos.
‘If the open heart surgery is a success this will enable her heart to work without all the medicines she’s currently on. Her medicines are keeping her alive.’
You can follow Tinsley-Rose’s progress by joining her Facebook group and the family have also started a fundraising page to help cover future care costs for their little girl.
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