A baby who was born with her heart on the outside of her chest from a condition with only a 10 percent survival rate is thriving as she approaches her third birthday.
Kieran Veitz, who turns three next month, has ectopia cordis, a congenital heart defect that occurs approximately 5.5 to 8 births per one million.
Minutes after she was born, she underwent an extensive surgery to put her heart, liver and intestines inside her body.
Kieran’s parents Caitlin and Brian Veitz spoke to Daily Mail Online about the progress of their now almost-three-year-old.
Today her parents describe her as a hard-headed, stubborn toddler who loves water, and loves to play with toy cars. Brian said she already knows all the letters of the alphabet.
As her third birthday approaches on March 11, Kieran is still experiences physical delays because of all the time she spent on a ventilator and her lack of muscle mass, but her parents say they see improvements in her every day.
Kieran Veitz was born with a congenital heart defect that required an extensive surgery when she was just minutes old. Next month she will celebrate her third birthday
Then and Now: Kieran’s condition called ectopia cordis caused her heart, liver and intestines to form outside of her body (left). She is now walking, starting to talk and turning into a ‘regular three-year old’ (right)
Kieran’s parents Caitlin and Brian Veitz describe Kieran as a hard-headed, stubborn toddler who loves water, loves to play with toy cars
The family’s adventure began in November 2014 when Caitlin, 28, and Brian went for a routine 20-week ultrasound.
Doctors spotted something unusual on the monitor: Kieran’s heart, liver and intestines were forming outside of her body.
The couple from Williston, North Dakota, quickly sought medical attention at a hospital in Fargo, where doctors were able to rule out other genetic anomalies like Down’s syndrome that might affect her condition.
After learning that she would be able to survive the ectopia cardis surgery, Caitlin and Brian geared up for a long road to delivery and an even longer road after.
They uprooted their lives and moved 700 miles to Rochester, Minnesota, to receive treatment from a team of doctors led by Dr Joseph Dearani at the Mayo Clinic.
They printed a 3D model of Kieran in utero so that the team would have an idea of what the surgery would entail.
She was delivered by C-section at 36 weeks with the help of 60 doctors and nurses from 12 specialty teams.
Immediately after birth she was taken into a five-hour surgery to place the heart, liver and intestines back where they belonged.
Kieran spent the next four months of her life in the intensive care unit. She was finally able to go home at six months old when the Mayo Clinic paid for a hospital jet to get her back to Williston safely.
Doctors diagnosed the condition in a routine 20-week ultrasound in November 2014. A team from the Mayo Clinic created a 3D model of what baby Kieran would look like when born
Right after Kieran was delivered by C-section in March of 2015, a team of 60 doctors and nurses took her into a five hour surgery to place her organs back inside her body
Kieran spent the first six months of her life in the hospital, where she became a celebrity with the doctors and nurses who cared for her
The following months were exhausting, full of doctors visits, maneuvering machines and Brian working four hours away on trips two weeks at a time with one week at home in between.
Kieran’s condition has racked up more than $3million, most of which was covered by insurance with the couple paying about $2,400 per year out of pocket.
The couple said it wasn’t until about a year ago that life started to go back to normal.
Kieran had her breathing tube removed in June of last year and has since started to walk and be vocal.
She doesn’t yet have expressive language but Caitlin says she is very receptive and ‘knows what you want her to do when you ask.’
Kieren is still on the feeding tube because she had the tracheostomy tube for so long that she developed a degree of PTSD from it.
‘She hasn’t wanted to eat because it feels like she’s choking,’ Caitlin said.
‘She’s just now starting to show interest in food, she gets excited when it’s close to time to eat and gets upset when her food is taken away from her.’
They’re hopeful that in six months to a year she’ll be eating on her own.
She’s still in occupational therapy learning to do things like stand up on her own and use her mouth muscles to form words.
‘A lot of the therapy is just getting her to have the confidence to do certain things,’ Brian said.
‘Before entering school she’ll attend a prekindergarten program that will get her up to the level of the rest of her class before entering kindergarten,’ Caitlin said.
Kieran still experiences global physical delays because of all the time she spent on a ventilator and her lack of muscle mass, but her parents are seeing improvements in her every day
Caitlin and Brian said that some of the more difficult parts of being parents are the simple everyday things, like when Kieran gets upset that her dad is leaving for work
She is still on a few medications, including diuretics that she’ll likely be on for the rest of her life.
‘They keep the fluid away from her heart so that it can pump blood to the lungs effectively,’ Caitlin said.
Her heart has a number of malformations but for the time being it’s doing well.
‘It’s almost as if all of her heart issues are cancelling each other out,’ Caitlin said.
Kieran will likely need another surgery down the road, but there’s no telling when that may be.
For the time being she’ll have check-ups every six months to monitor changes with her heart function.
‘If everything stays the way it is now she should be able to try anything that she wants to,’ Brian said, adding with a laugh that football and hockey were probably out of the question.
Just last month Caitlin returned to work as a teacher, sending Kieran to daycare every day.
The family has finally be able to go on vacations now that Kieran is no longer attached to machines. They took a two-week trip to the Grand Canyon last summer (pictured)
They’ve found that as things return to normal, they’re challenged with more typical toddler problems.
Caitlin said: ‘I can put in her feeding tube with my eyes closed while half asleep because it’s become so routine. But we get to normal things it’s like: “How do we do the normal parent thing?”’
‘Some of the hardest stuff is the more mundane stuff,’ Brian said.
While Kieran is generally very quiet for her age, she sometimes gets upset when Brian leaves for work.
‘She’s such a daddy’s girl,’ he said.
The couple said that for all the extra work she takes, Kieran is ‘a pretty low maintenance kid.’
They said overall their experiences in the past three years have made them ‘humble’.
‘It’s easy to not realize how many families there are that go through difficulties,’ Brian said.
Caitlin added: ‘Kieran is a lot more work than your average kid, but you become the parent your child needs. We found strength we didn’t know we had.’
She said she hopes that her story will help educate others: ‘It’s nice to give some insight because I think so many people hear about her condition and think that if she falls down she’s going to explode or something. She’s still resilient.’
Finally, they said it has made them more hopeful about people.
‘We had a lot of support from friends and the community and even strangers on the internet,’ she said. ‘We would go to restaurants and people would see the feeding tube and literally just pay for us without saying a word.’
‘Without Kieran’s condition we wouldn’t have seen the true value of the human spirit.’
Caitlin said: ‘Kieran is a lot more work than your average kid, but you become the parent your child needs. We found strength we didn’t know we had’
Caitlin and Brian said one of the highlights of the experience was all of the people they’ve met
(left) Caitlin and Brian posed with Kieran’s doctor Joseph Dearani at the Mayo Clinic, (right) Caitlin and Kieran are pictured with another member of the medical team