A Ringmer mother whose daughter had to have open heart surgery at just two weeks old has spoken of the fear and challenges she faced, and thanked the hospital who saved her baby’s life.
Claire Packham was 29 when she fell pregnant with her fourth child. Being diabetic, she went for a routine, 21-week heart scan in London’s Evelina children’s hospital, when doctor’s found something was wrong.
She said: “We were all sitting in this tiny room – there was me, my partner Adrian and three hospital staff. We got told they could not fix her heart, as her condition was very rare, but they could make her comfortable. We were devastated. The hospital also told us she will need three operations – one at two weeks old, one at 3-5 months and one at 3-5 years. Adrian and I were willing to take that risk.”
The baby had a series of heart conditions, including ventricles round the wrong way. The couple were told the baby might not even make it through the pregnancy.”
Ms Packham added: “That night, my partner and I decided after the news we had, we needed to name our little girl. We were both searching for the perfect name when my partner showed me his iPad. I went white and showed him my iPad – it was exactly the same name. That’s when we knew Lucie was the name for her.
“There is a group at the hospital called Echo for families having a baby with a heart defect, which was nice to know you’re not the only family going through it.
“The day Lucie was born, I was terrified. She was born by emergency forceps as she was back to back with me and her heart rate kept dropping.
“She was taken straight to the Neonatal Intensive Care Unit. The nurses were all fantastic, keeping us updated. When the consultant came round when Lucie was a week old, we thought he came to discuss surgery, but instead he said we could go home.
“Lucie’s operation date was on January 18 but just after Christmas, I took her to hospital as she was really not well. Turns out she had bronchiolitis.”
The operation was cancelled but Ms Packham pleaded with doctors to still have the pre-op appointment as she was concerned about Lucie’s health. She said: “We was there about 10 minutes and the consultant admitted her straight away. Luckily mother’s instinct was right.”
Lucie underwent surgery, in a gown made by the Pyjama Fairies, on January 22, 2016. Ms Packham said: “After surgery, we went to see Lucie and she was covered in tubes, which really scared me, but I was reassured by nurses she doing good. They gave us a black book to decorate so nurses could write in there daily, which will be nice for her to read when she’s older.”
On February 28, all four of Ms Packham’s children – Archie, Ellie-May, Maddie and Lucie – were christened. Lucie’s next operation will be in two years but for now, she is gaining weight and growing into a happy little girl.
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