WILMINGTON — After receiving some shocking news, a family is looking to the community for help.
Austin and Samantha Rayburn are expecting twins Kaiden and Kallum to join their family. But with Kaiden, they found out he was diagnosed with Critical Aortic Stenosis with Mitral Valve Dysplasia.
“Basically what this means is that because both the aortic valve and the mitral valve aren’t operating properly, the left side of Kaiden’s heart doesn’t dilate properly,” Austin told the News Journal.
Kaiden’s blood flow levels have “been within the ‘normal’ ranges,” according to Austin. But they worry Kaiden will have complications with his lungs at birth.
“Baby hearts work a little differently inside the womb, and because of his heart issue, his lungs are getting more blood than they need right now, which is putting stress on them and not letting them grow properly,” said Austin.
Before this, Austin and Sam found out the twins had an issue called Twin to Twin Transfusion Syndrome (TTTS).
“When twins share a placenta they also share fluids between the two of them. In TTTS, one twin is giving too much to the other and the other isn’t giving back enough. In this case, Kallum was the donor, giving too much to Kaiden. Kaiden was the recipient, receiving too much from Kallum,” said Austin.
They found out about the issue while attending Miami Valley Hospital’s Multiple Miracles program, after which they were sent to Cincinnati’s Children Hospital.
It was at their first appointment at Children’s, and at 17 weeks’ gestation, that they found out about Kaiden’s condition.
“Our initial reactions were fear because the doctors didn’t give us that good of an outlook. Over time that fear has sort of turned into determination as we do everything in our ability to make sure that these twins come out happy and healthy,” said Austin.
Now, Austin says they’re taking things day by day, week by week.
In regards to TTTS, after their appointment, the doctors decided not to intervene because of Kaiden’s heart issue.
“One of the risks with the Selective Fetoscopic Laser Photocoagulation surgery is that mothers, on average, will deliver ten weeks after the surgery. Because of Kaiden’s heart, this was a no go,” said Austin.
He said the doctors ruled that since there was no sign of growth restrictions on Kallum — despite him being “plastered up” against Sam’s uterus, as well as no signs of Hydrops (a large amount of fluid buildup in a baby’s tissue) or heart failure — they were going to try and buy some time now so hopefully, Sam could be pregnant longer.
According to a GoFundMe page the family started, because of the complications, they’re looking at a premature birth between 28 and 34 weeks. Samantha is currently 27 weeks pregnant.
A week after the appointment, they received a call saying Sam needed to be rushed into emergency surgery and that the TTTS had progressed more rapidly than anticipated.
According to Austin, what had happened is since the additional fluid Kaiden was receiving he had developed Hydrops and he was beginning to show signs of heart failure.
“Because of the bad connections between the twins, if Kaiden passed, there was a good chance Kallum would too,” said Austin.
While he couldn’t remember the exact statistics, he believed it was less than a 10 percent chance Kallum would survive if Kaiden passed.
“It was almost guaranteed that Kallum would at least have a stroke inside the womb because of the sudden increase of fluid coming from Kaiden’s passing,” he said.
Samantha was rushed into surgery, which lasted five hours.
According to Austin, in the procedure — Selective Fetoscopic Laser Photocoagulation surgery — doctors inserted a camera and laser “no bigger than a pinhead” inside of the womb and laser off the bad connections between the twins, effectively making two placentas out of one.
They also took some fluid from Kaiden’s sack and donated it to Kallum and protected Kallum in the off chance that Kaiden doesn’t make it.
“The results were nearly immediate but continued to improve over the course of the next few weeks. Kallum is now a perfectly healthy, happy baby,” said Austin. “Kaiden, however, still has a handful of complications
Because of the numerous issues, when Kaiden is born, he’ll need at least three open-heart surgeries. One within the first week of life, the next one when Kaiden is three or four months old, and the last one when he’s five-years-old.
According to the GoFundMe page, due to the COVID-19 pandemic, the local Ronald McDonald House isn’t accepting new people, though Austin said Samantha is going to apply — but it would only last a month from Kaiden’s delivery. If she’s not approved, Samantha will stay at the hospital with Kaiden.
Austin will take Kallum home to take care of him and the couple’s first child, one-year-old Rowan.
“We’re trying to educate ourselves and our family as much as we can and Children’s has been a huge help with that,” said Austin. “Bringing home a baby with a heart issue and prior open heart surgery is no easy task and we need to make sure we learn as much as we can before he gets here.”
To help pay expenses, the Rayburns are asking for donations. The donations can be made to their GoFundMe campaign (gofundme.com/f/7xsyp-kaiden-medical-expenses), to the family’s Paypal (paypal.me/kaidensstory), Venmo (@arayb95), or buy a t-shirt at bonfire.com/kaidens-story.
“Sam and I are hugely grateful for all the support we have received thus far. We haven’t raised much, but we know that we have people out there praying for us which we are hugely grateful for,” said Austin.
Reach John Hamilton at 937-382-2574