Ryan and Jaxson Vorp – Tetralogy of Fallot

Ryan and  Jaxson Vorp as newborns

In April 2020, Becky Vorp and her husband, Brad Vorp, attended a 20-week ultrasound anatomy scan for their identical twins. While the scan results showed two boys on the way, both babies were also diagnosed with Tetralogy of Fallot.

Tetralogy of Fallot is the most common form of cyanotic congenital heart disease. The defects that occur in Tetralogy of Fallot exist on a spectrum, with patients typically not requiring an intervention until 4-6 months of age. However, in some cases, neonates can be born cyanotic, or even dependent on fetal structures for survival, requiring intervention before leaving the hospital after birth.

“At the time, processing this news was so overwhelming. Due to COVID-19 regulations, I was the only one allowed at the appointment. I had my husband on FaceTime and we were in shock,” says Becky. “I went to see a cardiologist right after that appointment and they found that Ryan’s pulmonary valve was completely closed and Jaxson’s was closed, but eventually opened.”

Ryan and  Jaxson Vorp Family PhotoThis diagnosis changed the course of Becky’s pregnancy journey. As a nurse at UPMC Presbyterian, she felt comfort in knowing the teams at UPMC Magee-Womens Hospital and UPMC Children’s Hospital of Pittsburgh were equipped with the resources and expertise to care for her sons.

“There was no question that we would go to UPMC Children’s for Ryan and Jaxson’s care,” says Becky.

The next few months were filled with echocardiogram appointments for Ryan and Jaxson, a test that uses ultrasound waves to produce images of the heart. Although difficult, these weeks gave Becky and Brad time to process their sons’ condition and prepare for their delivery.

In mid-June, Becky’s water broke two months before her expected due date.

“My husband and I left in the middle of the night for UPMC Magee,” says Becky. “Our neighbor came by to watch our son, Nicholas, and I stayed at the hospital until delivery.”

During Becky’s hospital stay, she was closely monitored by the team at UPMC Magee. Due to Ryan and Jaxson’s unique conditions, the team at the UPMC Children’s Heart Institute collaborated with doctors at UPMC Magee and created a plan to safely transport the twins to UPMC Children’s after delivery.

“I had a call with doctors at UPMC Children’s on June 22. They walked me through the entire process that would follow Ryan and Jaxson’s birth,” says Becky. “The plan was to take the boys to the Neonatal Intensive Care Unit (NICU) at UPMC Magee and then transfer them to the NICU at UPMC Children’s, where they would perform the twins’ echocardiograms.”

The Vorp Twins Travel to UPMC Children’s

Early the next morning, Ryan and Jaxson Vorp were born. Both were stable and moved to the NICU at UPMC Children’s later that day.

“We knew the twins would eventually need open heart surgery, but the doctors wanted to wait until the boys were at least 5 kilograms,” says Becky. “We originally were told that because of Ryan’s closed pulmonary valve, we wouldn’t be able to bring him home before his surgery. Thankfully, Dr. Goldstein changed that.”

Bryan H. Goldstein, MD, is a pediatric interventional cardiologist and director of the cardiac catheterization laboratory and interventional cardiology service at UPMC Children’s. He joined the team in 2019 and played a major role in the Vorp twins’ journey at the Heart Institute.

At the time, Dr. Goldstein was one of the few experts capable of performing a patent ductus arteriosus (PDA) stent procedure on Ryan. During this advanced, minimally invasive procedure, a coronary artery stent was advanced carefully from a blood vessel in the neck into the PDA and lung blood vessel. A balloon is inflated to implant the PDA stent, which allows for continued lung blood flow without the requirement for a continuous medication infusion.

Dr. Goldstein performed the PDA stent procedure on Ryan at 22 days old while he was staying in the NICU. Both boys received palliative stent procedures in the catheterization lab at UPMC Children’s and were eventually welcomed home in late August 2021.

“I am so thankful for Dr. Goldstein and what he was able to do for Ryan and Jaxson,” says Becky. “Because of him, Brad and I were able to take both twins home with us, not just one.”

Ryan and Jaxson’s Next Stage: Open Heart Surgery

After months at home under close supervision from Becky and Brad and under the care of Dr. Goldstein, Ryan and Jaxson were ready for their open heart surgery for complete repair. Victor Morell, MD, co-director of the Heart Institute at UPMC Children’s, scheduled both surgeries within two days.

“On October 26, Jaxson had his open heart surgery. The next day, Ryan went for his,” says Becky. “Everything went well, and we were able to take Jaxson home in 10 days and Ryan in seven.”

Ryan and  Jaxson Vorp as toddlersAlthough the first several weeks at home were an adjustment, the Vorp family was relieved to be together.

“At about six months, Ryan and Jaxson had recovered well and I was able to hold and treat them like normal babies,” says Becky. “They continue to grow and are on track with every milestone.”

Ryan and Jaxson attend regular appointments at UPMC Children’s with Dr. Goldstein as their primary cardiologist. Ryan recently received a new stent in one of his lung arteries and will continue to be monitored in the future for additional procedures.

“We are so thankful for the team at UPMC Children’s,” says Becky. “Ryan and Jaxson just celebrated their second birthday and are like any other kid their age. If it wasn’t for UPMC Children’s and the amazing team, my kids may not be here. To other parents undergoing a similar experience: always know that there is light at the end of the tunnel. Never be scared to stick up for your kids and advocate for them.”

Ryan and Jaxson’s treatment and results may not be representative of similar cases.