An expectant mother whose six-week-old baby died tragically from meningitis has told with heartbreaking candor how the little girl she is now carrying could die within days of being born, because of a congenital heart defect.
When Georgia Higginbottom, 23, held her son, Oscar Nally, for the first time when he was born two weeks premature in September 2018, it was the happiest day of her life – only for her fortunes to be cruelly reversed when he died just six weeks later, on November 13, four days after contracting meningitis.
Following her devastating loss, when she and her chef partner, Adam Gray, 29, discovered they were expecting in July last year, they felt blessed – but discovered during a scan in November that their daughter, who they have called Miraya, has hypoplastic left heart syndrome (HLHS).
This means Georgia, who does not work, of Fleetwood, Lancashire, England, faces losing a second baby within days of her being born, as the left side of her heart has not developed properly and her only hope of survival will come from three open heart operations – starting within her first week of life.
Now 24 weeks pregnant and due on April 13, Georgia said: “It's like I'm preparing myself to lose another baby.
“But it's important we keep hold of some hope. She deserves a chance to see if she can survive."
Georgia continued: “It has been a year since Oscar died and it's really hard.
“Obviously, you never think you're going to have to go through losing your child, let alone possibly losing one twice.
“I don't know how to explain it. It was such a shock when we found out Miraya may not make it past a few days. How do you cope with that?"
“Oscar died from meningitis so there is no link between his death and the condition Miraya has. It just seems like it's the worst possible luck," she added.
Even with surgery, her daughter's life expectancy will be just 25, which comes as a massive blow when Georgia was so cruelly deprived of sharing her first child's life.
She is haunted by the memory of Oscar, the little boy who had already become the center of her universe, being taken to the hospital with an infection about a month after his birth.
Allowed home, just two weeks later he fell ill again – letting out a shrill cry before his breathing became wheezy.
Admitted to Royal Manchester Children's Hospital, tests showed that Oscar had Group B streptococcal meningitis (GBS) – caused by bacteria carried by between 10 and 30 percent of pregnant woman, which usually live harmlessly in the intestinal tract or vagina, according to the charity Meningitis Now.
Meanwhile, brain scans revealed that every single part of his brain had been turned black by the resulting infection.
Making the heartbreaking decision to turn off his life support machine, Georgia cradled her son for eight hours until he passed away.
While she was not planning on having a baby with Adam, who was not Oscar's dad, she had started to feel really positive about her pregnancy, only to discover that something was very wrong.
She continued: “I was not sure how I felt at first because it had been just a year since losing Oscar and I'm still grieving."
“Then we started to think it would be a positive thing and how much we did want a baby, so we could become a proper family," Georgia said.
“I liked the idea of Oscar being a big brother. I think he would have loved having a sister so much.
“But I was also so worried, as I immediately started to think about the things that could go wrong and I didn't think I could enjoy the pregnancy."
After much painful soul searching, before she allowed herself to look forward to being a mom again, a routine scan in November, at 16 weeks at Blackpool's Royal Infirmary, threw her into turmoil again.
“During a well-being test to check the baby was okay, the sonographer went to get someone else, then they took me into the family room," Georgia recalled.
“They didn't tell me about the heart problems at that stage, as I don't think they were sure what was going on, but they referred me to Liverpool Women's Hospital where I had an appointment a few days later."
Georgia recalled: “I was really worried. I had two ultrasounds, then they sat us down and told us that she had a rare congenital heart defect called HPLS.
“It means she is missing critical portions of the left side of her heart, so it cannot effectively pump blood around the rest of her body.
“They told us it was a life-threatening condition, but I already knew that because I know someone whose baby died from it."
“I was so overwhelmed, I did not know what to think or what would happen," she added.
According to Great Ormond Street Hospital for Children, HPLS is a condition where the left ventricle, or lower pumping chamber, does not develop properly, making it much smaller than usual, while the mitral valve between the left ventricle and the left atrium – the upper left filling chamber – is often closed or very small.
The aorta – the main blood vessel carrying blood from the heart to the rest of the body – is also smaller than usual, so the heart cannot pump blood around the body effectively.
Told Miraya's only chance of survival would come from three high risk open heart operations, known as the Norwood Procedure – one within a week of her being born, the second at three to five months old and the third at three or four years old – the couple were shell-shocked.
Georgia, who has been told the procedures aim to, eventually, enable the right side of the heart to take over the work of the left, said: “She will have to meet certain requirements to be able to have this type of procedure. When she's born she will have to be above a certain weight.
“If she does not reach the requirements she will be put on end of life care."
Georgia explained: “I'm having regular scans to see if the condition is getting worse. She could die at any time and when it gets past 25 weeks, I could end up having to give birth to my dead child."
All the couple can do now is hold their nerve and hope to reach full-term, as they try and get on with their normal lives, despite having to travel to Liverpool for check-ups and to look at her growth every six weeks.
Georgia continued: “We prepare ourselves every time we go to hear bad news, to hear that her heart has stopped beating."
“I've just got to get through the pregnancy. To be honest, I do not know how I'm coping. It was such a huge shock I think I'm still processing it," she said.
“We are taking it in stages. Every time we find out she's okay we just carry on.
“We have to face the situation that even with the open-heart surgery her life expectancy is still only 25 years and she could die at any time."
Georgia continued: “We were given the option to terminate the pregnancy, but we made the decision that our baby deserves a fighting chance."
Despite deciding against a termination, the couple have had to face some extremely painful facts about Miraya's life, if she survives.
“She will never be able to have her own children, because it will be too dangerous for her to give birth," said Georgia. “She will struggle, she won't be able to put any extra strain on her heart and exercise will be difficult."
“I want to raise awareness of this condition. Nobody really considers what it means until it's happening to them. There are other people going through it but you feel like you're doing it on your own," Georgia added.
Miraya will also have to be born in Liverpool, two hours from their home, where the hospital is better equipped to deal with the complex problems Georgia's pregnancy presents.
Unable to work because of all the demands on her, with only Adam's chef wage to sustain them, the couple are struggling to meet their current transport costs, as well as fearing how they will survive financially when Miraya is born, so are crowdfunding using GoFundMe to help with costs.
“Liverpool is a two-hour drive from our home and we will be expected to stay in hospital perhaps until after her second lot of surgery at six months," Georgia said.
“She has to be born in the Women's Hospital and then immediately transferred to Alder Hey Children's Hospital, because they have all the specialist equipment and teams to help her survive.
“We have to be in Liverpool in time for the birth too as she wouldn't survive the long journey from a hospital near our home."
“It will be really tough with only one wage, particularly if Adam is unable to work and we're desperate to keep our family together after the birth," she explained.
“We've not bought any baby clothes or toys, or even thought about it, because we don't know what is going to happen.
“I just can't bear to think about the fact I might have to bury my child when I've already done it once."
Still keen to keep the memory alive of the son she loved and lost, Georgia regularly visits his grave and talks to him.
She said: “He's a big brother now.
“We went to his grave to tell him that he's going to have a little sister."
She added: “If she is anything like her brother, she will be really strong. He fought for 10 hours on his own despite having brain damage. I did not leave his side the whole time.
“As for Miraya? She's going to be a fighter like her brother."
To donate visit www.gofundme.com/f/miraya039s-hlhs-fight
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