Expectant couple Caitlin and Brian Vietz from Mandan, North Dakota, were given some shocking news when they attended a routine ultrasound at 20 weeks.
Instead of just finding out the sex of their baby, the couple were told that their daughter’s heart was growing outside of her chest.
Caitlin said, ‘he showed us the silhouette of the lungs and where the heart would normally sit between the lobes of the left lung. Then he pointed like three inches to the left and showed us where her heart had grown. And that’s when I said it out loud, ‘her heart is outside of her chest.’’
Doctors explained to the couple that their daughter was suffering from a rare congenital heart defect called ectopia cordis that affects only 1 in every 100,000 babies.
Brian said, ‘we went online and half don’t even make it to birth. So yeah there was a very slim chance of her making it.’
Despite the odds being stacked against her, doctors at the Mayo Clinic were determined to give baby Kieran the best chance of survival. In a medical first, they even printed a 3D model of her before she was born to help plan the surgery that she would need.
Kieran was born via emergency caesarean with a team of 60 doctors gathered to help stablise her. Due to the seriousness of her condition there was a high chance that she might not survive the operation to put her heart back inside her body.
Caitlin explains, ‘I had agreed not to hold her so that she could go straight into surgery. I got a glimpse of her as they walked by and it took every part of me not to call out and say, ‘hold on wait! I changed my mind.’ That was really hard.’
In just 5 hours, surgeons had managed to successfully place Kieran’s heart back inside her chest. But it wasn’t until a week later that mum Caitlin was able to finally hold her baby for the first time.
‘It takes a team of at least 4 people to lift your baby out of your arms as they have to move the breathing tube, and they have to make sure we don’t lose wires, and PICC lines, and tubes, and drains and such. And so I think I held her for maybe 20 minutes before she got irritated and had to go back to her bassinet.’
And it was another 5 long months before Kieran was finally strong enough to make the journey home.
Now Kieran is 18 months old and doctors are absolutely delighted with her progress. But she will still need much more surgery in the future.
The tot currently has a tracheotomy tube, which creates an artificial opening in the throat and helps her to breathe.
Brian explains, ‘with her heart being outside her lungs kind of filled the space that would have been taken up by the heart. So when they put the heart back in the lungs just didn’t have enough room to fully expand. So they put the trach in ’
Caitlin adds, ‘It’ll come out we’re guessing in the next 3-6 months. It all dependent on her, how she handles the next few steps. It’s unchartered territory.’
Although the tube has been invaluable in helping with Kieran’s breathing, it means that she has primarily been fed through a tube since birth and has only just started learning to talk. But she is now seeing an expert to help her to catch up with other children of her age and get used to eating and speaking.
For now, the family are raising money online and with local fundraisers to help pay for Kieran’s medical bills – and Caitlin and Brian have big hopes for her future!
Brian said, ‘we want to raise awareness about children born with congenital heart disease and one of the nice things about this whole ordeal is that we know we’re helping the medical field and families in the future.’
‘She should have a pretty normal life, be a normal kid and live a regular life.’
Caitlin adds, ‘scrape her knees, get dirty, ride her bike, play games, join choir, run for student council, get a drivers license’
‘Become a cardiac surgeon!’ jokes Brian!
With all that Kieran has overcome already in her short life, there’s no stopping this little girl!