Morgan Miles was born with a rare heart condition which meant that by six-months-old she’d had open heart surgery three times. Catherine Scott reports.
Last December Lee and Monika Miles were preparing for a family Christmas with a new addition.
Their baby girl, Morgan, was born a week before the festive celebrations but instead of the happy family time they were expecting with three-year-old son Dexter, they were devastated to find out their new baby was fighting for her life suffering from a combination of extremely rare and dangerous heart defects.
Morgan was born suffering from congenitally corrected transposition of the great arteries, ventricular septal defect, an Ebstein’s anomaly and a hypoplastic left ventricle and aortic arch. At just three days old she was put on a life support machine to keep her heart and lungs pumping while specialists decided how to treat her.
It was decided Morgan needed lifesaving heart surgery, which she was given less than a 50 per cent chance of surviving.
The surgeon in charge said he had not seen anything like the combination of defects she was suffering from in his 20-year career. After an agonising 12 hours the surgery was deemed successful, although her parents were warned she would need more operations as she grew up.
Seven weeks after the operation Morgan was allowed to go home.
“Those seven weeks were the most heartbreaking of my life,” says Lee, from York.
On Father’s Day, June 16, Morgan was readmitted to Leeds General Infirmary for the second of her three planned operations.
This operation called “The Glenn”, redirects blood from the upper body straight to the lungs, bypassing the heart and is designed to reduce the work her single ventricle heart has to do. The procedure went very well, Morgan made a quicker than expected recovery and a week later the family were preparing to go home.
That’s when things started to go wrong. Within an hour Morgan went from being a happy, smiling baby to unresponsive and lethargic. She had picked up a still unknown infection and was put straight back on to the high dependency ward. The infection was treated with antibiotics, but tests showed that Morgan’s mitral valve had “sprung a leak”, which meant not enough blood was being pumped to her lungs and the rest of her body.
The leak was so severe that Morgan needed a third open heart operation in six months. The family were once again told that this was an extremely high risk operation.
Once again there was an agonising and long wait whilst the surgery took place but once again the surgeon deemed it a success. And yet once again just as the family thought they were in the clear, Morgan picked up a virus and was in a critical condition.
Morgan had contracted rhinovirus or simply a common cold. It was critical to the success of the operation’s long-term effects that the repair wasn’t damaged, so Morgan was kept in intensive care, on oxygen and sedation to give the valve as much time as possible to heal.
A week later Morgan was moved from ICU back to the familiar surroundings of the HDU ward. The family felt a massive relief to be back on a ward with other families and the nurses they knew so well.
Morgan had been in hospital for five weeks, heavily sedated and on high levels of oxygen. Before they could go home Morgan had to be weaned off the oxygen and pain medication. Typically Morgan responded in her usual way, one morning she pulled off the oxygen tubes from her nose and whilst the nurses rushed to replace them her oxygen levels remained in the high 70 per cent levels (where her levels should be). That was the last Morgan saw of the oxygen tubes. Just a few days after removing the tubes, Morgan started to become more alert, more responsive and finally after six weeks without one, she produced a smile.
Morgan’s chances have been greatly improved after recovering from her three heart surgeries so far. Although she will need regular hospital visits for check-ups, some minor procedures and continuous support from specialists, if all goes well she will not need to have any further major surgery until the Fontan Procedure (similar to the Glenn but diverting the blood from the lower body instead).
“The last eight months have been the most difficult in our lives,” says Lee. “How do you cope with your baby girl having three open heart surgeries, knowing the high risks of such surgeries in a small baby, yet each time knowing that if she doesn’t have the surgery she won’t make it, you put your faith in the experts, strap yourselves in and hang on.
“We wouldn’t have coped without the support of family or the support of The Sick Children’s Trust, the on-site accommodation they provided allowed us to be within minutes of Morgan’s cot side 24 hours a day. The cardiac department in Leeds are the true heroes of this country. We are totally stunned that a complete stranger, hundreds of miles away was moved enough by our situation that they wanted help”
“Although Morgan’s heart condition is unique, the months we have spent in hospital with her has made us realise that there are plenty of other families going through a similar thing to us.
“We are delighted that our friend Tom’s Go Fund Me page will be able to support families like ours who need to spend weeks or months in a hospital. Morgan’s outlook, although significantly improved is by no means certain. If everything goes to plan she won’t need further surgery for two or three years but we have no guarantee of that either way so we try to take the advice of the specialist cardiac team at LGI and take one day at a time and enjoy every day”
Family friend Tom Lawrie has launched a crowdfunding appeal to help the family which has already raised £1,500 of its £2,000 target.
“This fundraiser is aimed at supporting Morgan’s family as she continues to receive treatment, alleviating the financial burden of taking time off work and taking Morgan to hospital visits,” says Tom. “Any additional funds raised will go to The Sick Children’s Trust, who supported Lee and Monika during the seven weeks Morgan was in the hospital and the ward.”
Tom will be running the Brett Owler Marathon on November 24, 2019, as well subsidiary races.