By Katie Mercer @katiemercer_BM

WHEN expectant mother Caitlin Veitz attended a routine 20 week ultrasound, she and her husband Brian were expecting to find out if their baby was a boy or a girl

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Videographer / director: DeAnne Billings
Producer: Katie Mercer, Ruby Coote
Editor: Marcus Cooper

Caitlin and Brian Vietz were so excited when they found out they were expecting a baby

But instead her and her husband Brian were given some shocking news – their baby daughter’s little heart was growing outside of her chest.

Their baby girl had a rare congenital heart defect (CHD), ectopia cordis, that affects only one in every 100,000 babies.

First-time mother Caitlin, said: “We had no idea that anything like this could happen. It was just beyond anything that new parents imagine. It was hard to comprehend.

“We knew then that the odds were stacked against her.”

But their daughter Kieran was a week old before they could finally hold her

Although CHDs are the most common birth defect of all, occurring in nine in every 1,000 births, ectopic cordis is the rarest form and is lethal - 95 per cent of babies with ectopic cordis die within a week of being born and 90 per cent pass away within three days.

Engineer Brian said: “We broke down for a while. You never even think like ‘this could happen to me’. We were wondering about all the possibilities.

“What’s going to happen? Will our baby be okay? Is there even anything they can do to fix it?

Kieran had to have surgery immediately after being born
A team of sixty surgeons and specialists were on hand to carry out the surgery

“Something like that seems so extreme and unusual that you just don’t know what is even possible”.

After a worrying and closely-monitored pregnancy, Caitlin gave birth at the Mayo Clinic in Rochester, Minnesota hours away from their home in Mandan, North Dakota.

Doctors at the Mayo Clinic realised that to have any chance at all of survival, Kieran would need complex and highly specialised surgery immediately after she was born.

In a medical first, a 3D anatomic model of Kieran was made to prepare surgeons by showing, in exact detail, what Kieran would look like when she was born and where her organs would be located.

Kieran's condition was exceedingly rare and the chance of survival is low

This helped the team plan and prepare for the surgery that Kieran would need as soon as she was born.

Within an hour and a half of Caitlin being taken for an emergency C-section, a team made up of sixty different doctors from twelve different specialist teams, gathered to stabilize Kieran and to operate.

Caitlin said: “I had agreed not to hold her so that she could go straight to the surgery. “That was maybe one of the hardest things. I didn’t see her when she was born.

“I heard this little cry and it was very sweet. Bitter sweet.

95 per cent of all babies born with ectopia cordis die within a week of being born

“I got a glimpse of her as they walked by with her and it took every part of me not to call out ‘hold on, wait, I changed my mind!’”
Kieran was in theatre for five hours while the team of specialist surgeons worked to plaec her heart safely inside of her ribcage.

Brian said: “It was really scary. I wasn’t sure if I was going to ever be able to hold my child while she was alive. It was a terrifying experience.”

Little fighter Kieran survived her operation but had to remain in intensive care for the first four months of her life.

Kieran's surgery was a huge success but she faces a lifetime of monitoring appointments

She was one week old before Caitlin and Brian could hold her.

When Kieran was five months old, Kieran was ready to go home with her parents but she was still on a ventilator and needed constant medical care – a commercial flight was out of the question.

To save Kieran from facing an even longer stint in hospital, The Mayo Clinic arranged for a private plane to safely fly her the 517 miles to her home.

Brain said: “It was unbelievable. There was this little girl, not even six months old and she gets her own private flight.

“And she slept through the whole thing!”

When Kieran’s heart was placed inside of her chest, her lungs became slightly squashed as they had occupied the empty space where her heart should have been prior to the operation.

And her family have to raise money online to pay for her mounting medical bills

Because of that, she still has a trach fitted in her throat to help her breath and be fed through a tube.

Caitlin and Brain have had to learn how to change her feeding tube and trach to sufficiently care for their little girl who is now 18 months old.

Kieran, now 18 months old, will face a lifetime of hospital appointments and will need further surgery on her heart and liver but doctors are delighted with how she is progressing so far.

Caitlin and Brian have to fundraise online and hold special events to pay for Kieran’s medical bills. They say that their baby girl is so tough even broken heart won’t stop her.