A 16-month-old toddler is desperately waiting for a transplant after fighting back from a cardiac arrest and open heart surgery.
Terry Archbold and his wife Cheryl initially thought their daughter Beatrix may have contracted covid-19 when she lost her appetite and became lethargic. The family, from Burnopfield, County Durham, had just returned from a trip to Disney World in Florida and Cheryl, 40, and her daughter Eliza, 11, had tested positive for the virus.
When a small rash appeared on the back of Beatrix's neck at the beginning of May, she was rushed in an ambulance to the Queen Elizabeth Hospital in Gateshead to be checked out. A doctor detected a heart murmur and chest x-rays revealed that one side of her heart was enlarged and not functioning properly.
Terry, 44, said: "We thought it was covid as the symptoms matched what we were feeling in Eliza and Cheryl. It was a massive shock, it was totally unexpected. It didn't cross our minds that it was a life threatening cardiac issue."
The youngster was transferred to the Freeman Hospital in Newcastle where she had a Hickman Line inserted into her body so she could receive medication. Terry said they were told by an anaesthetist that she had coped really well with the procedure and they were asked to wait in another room while they finished.
He said: "No sooner had that door shut behind us, alarms started going. I heard people running and alarms. Beatrix had a cardiac arrest and they had to fight to bring her back. Shortly after the nurse came in and said 'we've got her back'.
"They did whatever they needed to to get her back but they were of the opinion that she would have further cardiac arrests and if she did she wouldn't make it through the night."
Terry and Cheryl, who lost their daughter Isabel when she was stillborn in 2018, were told by medics that there was an option for Beatrix to undergo open heart surgery. They said this would enable her heart to function until she hopefully receives a heart transplant, which will save her life. The operation involved attaching her heart to four pipes, which are connected to a machine.
Terry said: "It was either we lose her overnight or she goes to surgery and she has a chance of coming through. We gave our consent and signed the paper work and they took her away overnight to do that surgery.
"Given how weak she was, given that she had just had a cardiac arrest and given the surgery, my expectations were that when this phone call comes it's not going to be good news.
"I will never be able to put into decent enough words, when I got that phone call, the joy at that moment in time. I will never be able to describe that feeling knowing she was still there and still fighting.
"Each of the pipes are roughly the thickness of an adult's little finger. They came out of her and they were running to a machine at the end of a bed. Basically that machine was keeping her heart functioning and from there it's been two weeks of gradual improvement day by day."
Beatrix has since been using a Berlin Heart Ventricular Assist Device (VAD) which gives her more movement. Doctors will need to keep her condition stable until a new heart becomes available. However sadly there is no guarantee that she will receive one.
Terry said: "This machine gives her more mobility. She's been on the floor playing and her little character has started to come back. Now it's just a case of managing her for the mean time and keeping her stable until an organ potentially becomes available."
Terry said that Beatrix is one of 20 children across the UK who are on the urgent list for a transplant. He said that when a heart does become available doctors have a maximum of four hours to get the organ to the patient.
He said: "It might never happen.
"The frustrating thing is there's babies here and there's children older than Beatrix. Unless you're put into that environment people aren't aware of what's going on and just how many children, not just here but in Great Ormond Street in London, are hoping for some sort of miracle.
"The difficulty with children is you are dealing with the very sensitive topic of the loss of a child. You're looking to parents at the worst possible moment of their lives, when they have lost their child and their whole world is falling apart."
Cheryl has remained at the hospital in High Heaton while Terry returns home and cares for Eliza. Beatrix's older sister has also been coming in to visit her. Terry said: "It's been massive that Eliza has been strong enough and brave enough to come on to the ward. Beatrix absolutely lights up for her."
Terry and Cheryl have created a social media page 'Beatrix's Heart Journey' to keep family and friends up to date with what has been happening over the past month. More than 1,800 people are now following Beatrix's page.
Terry said: "The support we have had from family, friends and strangers has been absolutely mind blowing. There are strangers reaching out to us - they are people who have gone down this path themselves in the past.
"The staff are absolutely mind blowing in the level of care they provide. It's not just in the things they are doing and they things they are saying, you can see in their eyes they genuinely care about these kids and what's going on."
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