A mother and father were told that their baby girl would be born with half a heart when they went for a 20-week hospital scan. Hannah Marsden and Michael Lewis gave birth to Mila-Boo on June 16, 2022.
Minutes after she was born the doctors took her away, and she was later diagnosed with Hypoplastic Heart Syndrome. The NHS defines the condition as when the left lower pumping chamber of the heart does not develop properly.
Speaking exclusively to the Liverpool Echo, Hannah said: "We were told it was highly unlikely we could get pregnant without IVF. We were due for our first round in January 2022 but found out we were pregnant while isolating with covid in September of 2021.
"We had a 12-week scan and paid for a 15-week scan and everything was fine. It soon took a turn as at our 20-week scan it was discovered our miracle baby girl had something wrong with her heart. We were sent to a specialist the next day.
"After many scans and being transferred to Liverpool Woman's Hospital, we were told the condition our precious girl had which was Hypoplastic Heart Syndrome. Our world collapsed around us and I just wanted to be swallowed whole as the cardiac consultant informed us it was a 10 out of 10 case and offered us three choices - a termination, letting mother nature take its course or doing everything they medically could."
They were told to visit Derian House Children's Hospice, who told them exactly what would happen when their daughter was born. They said she would be "taken away" to get her into a stable condition.
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Hannah said: "I went to full term but was induced a day before my due date. I was in labour for five days before she finally made an appearance and I saw her for the first time.
"They let me hold her for about two minutes, my mum was there and she couldn't even hold her before they took her to the ICU to stabilise her.
"Once she was stable she was taken to Alder Hey Children's Hospital where she was put to sleep and a IV line was placed into her neck. We were able to see her, however I was still at Liverpool Woman's after getting an infection."
Five days after Mila was born she was taken for her first open heart surgery, which lasted almost seven hours. Without the surgery Hannah said her daughter would "not have lasted a week". After the surgery, she was taken to intensive care before coming home four weeks later.
Hannah and Michael have been taking Mila for check-ups every month since her operation, but doctors have now found problems with pressure on her heart and lungs. If the pressure goes untreated, Mila's life expectancy would be reduced from 40 years down to around 20.
Hannah said: "As you can imagine we were absolutely broken inside hearing those words, but we are hopeful and she's now having her next open heart surgery on February 14. I have full faith in the surgeons to help fix the pressure issue so she can get the full treatment she so desperately needs."
Hannah said Mila has a minimum of four open heart surgeries ahead, which is why they have set up a GoFundMe to help them pay for rent and bills after they both came out of work to take care of Mila.
She added: "I am embarrassed to ask for help as me and Michael have always worked, but I don't have any other choice. My maternity leave is up and Michael was off sick but this has now been reduced to no pay.
"We are in a very hard place right now and were given two months to leave our home without having another one due to being behind on rent. We have taken out loans that we can't pay back and we're having to choose between paying rent or the bills."
To donate to the family's GoFundMe click here.
