When Ebony was born in September 2023, her congenital heart defect went undetected until she started to get very poorly at just over a week old.
Ebony was ‘blue-lighted’ from Scunthorpe to Leeds, where she had emergency heart surgery to save her life…
Ebony’s mum, Courtney, said:
“Our little girl was born on 13th September 2023 and we were sent home thinking everything was fine. 8 days later however, she went downhill very quickly. She turned purple and couldn’t breathe properly.
“We rushed Ebony to our local hospital in Scunthorpe where they told us they didn’t know what was wrong and we should prepare for losing our daughter.
“They did a scan of her heart, and they knew that the heart wasn’t working the way it should. We were then transferred to Leeds by Embrace. Our little Ebony’s organs had started to shut down and was still very touch and go if she would make the journey.
“Once at Leeds we were informed that Ebony had hypoplastic left heart syndrome and coarctation of the aorta as well as two holes – one in the top and one in the bottom.
“Without CHSF our time in hospital would have been a whole lot worse. We will be forever thankful.”
“When we were told this our world stopped. We had no idea what this meant or where we needed to go from that point.
“We met with surgeons and consultants in Leeds and we were informed that she would need open heart surgery to survive (Norwood procedure), but Ebony developed an infection which delayed the surgery.
“We were in PICU (paediatric intensive care unit) for a total of 11 days before we got the go ahead to have the operation. Because of how poorly Ebony had become we didn’t know what the outcome of the surgery would be…
“On 2nd October 2023, Ebony had a 7-hour operation and absolutely smashed it!!!
“Once out of surgery there were a lot of complications and a lot of up and down days, but a miracle happened and she started to get better!
“After a solid week of up and downs we got the clear to move onto Ward 51’s (children’s heart ward) high dependency unit (HDU) from PICU. I thought we were never going to get there.
“It wasn’t as straight forward as we had hoped but after 9 long weeks we were discharged and allowed home.
We are now in the process of getting ready for Ebony’s next surgery – her Glenn – around March 2024 time. So, it’s all systems go but Ebony is doing amazingly well and constantly has a smile on her face.
“Without Children’s Heart Surgery Fund our time in hospital would have been a whole lot worse. We will be forever thankful for all the hard work and the dedication from the team.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Ebony every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
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