Macie Balfour’s Story

Macie was born in April 2005. She was small and one week overdue but was born without any complications. But after a few weeks Macie wasn’t feeding properly and started to lose weight and have shallow breathing. Her GP suspected she has a small hole in her heart or Ventricular Septal Defect but that it was nothing to be concerned about.

However, at just 9 weeks old, following a visit to a consultant in an outpatient clinic, Macie was admitted to hospital following concerns she had serious problem with her heart. Doctors discovered her liver was enlarged and her lungs were heavily congested. Macie was in heart failure.

Macie was transferred to GOSH where she was diagnosed with a rare congenital heart condition called Truncus Arteriosis. This is a condition which happens at birth whereby the heart only develops a single blood vessel out of the left and right ventricles when a normal heart should have two – the pulmonary artery and aorta. Macie was missing her pulmonary artery. Doctors said it was a miracle Macie has survived to 9 weeks without having a cardiac arrest.

She underwent open heart surgery for six and a half hours in which doctors fitted a new Contegra Conduit using a vein from a calf’s heart to replace the missing blood vessel. It measured just 1.3cm in length.

Macie spent 5 days in intensive care on a ventilator and then 5 days on the ward. After that the difference was incredible she started feeding properly and breathing properly and putting on weight.

But after around 12 weeks after the operation Evlyn was worried things weren’t right. They returned to GOSH and doctors discovered the conduit had doubled in size, and was taking up more room in Macie’s heart. They were facing the prospect that Macie might have to wait for a donor vessel to replace the one they fitted before.

Thankfully Macie stabilised and her doctors decided to wait and see how she coped with the conduit. Ten years later and Macie is fighting fit and doing amazingly well.

However, her conduit has a shelf life of 10 years, meaning Macie faces the prospect of undergoing heart surgery every 10 years for the rest of her life to replace it.

Earlier this year Macie got her whole school to take part in Wear it Beat and wear red to help raise money for the British Heart Foundation’s life saving research.

Quotes:

Evelyn said: “Macie is a real inspiration. To hear the news that she had this rare heart condition and that there was nothing we could do about it was absolutely life-changing. We were absolutely devastated. Nothing can prepare you for that.

“I found it unbelievably difficult to cope with. It was the worst chapter of my life, I didn’t know whether or not she would live through it, and if she did what life was going to hold for her in the future living with this condition. It was a scary scary time.

“For the first three years of her life I slept on the floor next to her. We couldn’t do things with her the way you would a healthy child. If she was crying it was so worrying. It wasn’t as simple as did she need changing or did she need feeding, I was worried it was more serious, was it her heart?

“If anything, things have got harder as Macie has got older. Now she’s now old enough to comprehend what fear is and to understand her condition more. Most parents struggle to get their child to the dentist. I have to take Macie for regular MRI scans of her heart. The last time Macie had to be sedated because she was so scared. Macie’s biggest fear is if it is going to hurt, which it won’t, but she was in the toilets crying saying she didn’t want to have her condition any more. As a parent you want to allay these fears but there’s nothing you can do.

“When we were first told that Macie has Truncus Arteriosis I never thought she would live this long. We are so so lucky to have Macie now bearing in mind what she went through in the first few weeks. She has been fighting her whole life. I just can’t help but think when she was a baby she must have been laying there thinking will someone please just realise what’s wrong with me.

“Macie is little and loud but we wouldn’t have her any other way. She is a real fighter and an inspiration. She has to take medication every day, and her conduit does have a shelf life of 10 years. So we may one day have to face the fact that she may need it replaced again, but we will face that when it comes.

“The BHF helped support us when Macie was young, which is why Macie decided to get her whole school to wear red in February and take part in Wear It Beat It.

“Hopefully the money we raise will help children like Macie who are born with congenital heart defects. We’ve come such a long way with research, if Macie was born a few years earlier than she was she might not have survived. We want to help the BHF keep funding research to give people like Macie a better chance to have a brighter future.”

Contact:

evlynbarr@hotmail.com