Article
Support for Rowan's special heart
The room was packed with all of Jett’s doctors: Neonatology, cardiology plus hepatology, general surgery, pulmonology, interventional cardiology and palliative care. All eyes were locked on his mom, Victoria.
She’d written down her questions, then made the font smaller so they would all fit on one page.
“My last question wasn’t fair, but I asked it anyway,” Victoria says. “I asked: If this was y’all’s kid, would you do the procedure?”
The pause that followed lasted a lifetime. Finally, Suren Reddy, M.D., Pediatric Interventional Cardiologist and Professor at UT Southwestern, spoke up.
A rare birth difference
About a year earlier, Victoria had a prenatal ultrasound. She and her husband, Jacob, learned their baby had a giant omphalocele. Rather than his liver and intestines developing inside his abdomen, they were developing in a thin, protective sac near his belly button.
They were referred to a maternal-fetal-medicine specialist who told the family to stay positive – babies are resilient – and discussed what their baby’s first weeks might look like.
About a month after he was born, baby Jett was transferred to Children's Health℠ for more complex care. His body was retaining water and no one knew why. He also had pulmonary hypertension, dangerously high blood pressure in the lungs.
A baby you couldn’t help but love
Jett’s family met with Noorjahan Ali, M.D., Neonatologist at Children's Health and Associate Professor at UT Southwestern, and pulmonary hypertension expert Megan Griffiths, M.D., Pediatric Cardiologist and Assistant Professor at UT Southwestern.
Dr. Griffiths identified a blood clot that explained why he was retaining water. When he started on the right medicines, Jett lost nearly 5 pounds of just water weight.
Jett couldn’t breathe on his own, so his care team recommended a tracheostomy, which would create an opening in the throat to help him breathe.
“With these two treatments, he turned around. He was engaged and interactive and he had this beautiful baby peach fuzz hair,” Dr. Ali says. “Jett had our whole team wrapped around his little finger. You couldn’t not love this baby.”
Then came the next milestone – feeding. He'd been getting nutrition through an IV but the team wanted to transition him to tube feedings, which would bring him one step closer to going home.
“Every time we tried feeding him, he threw up,” Dr. Ali says.
An abdominal CT scan revealed the issue. Jett had an abnormal connection between his veins that was routing blood around the liver and intestines (a portosystemic shunt).
A dedicated team of experts
Doctors typically have two options with a portosystemic shunt. Close the shunt and reroute blood flow through a vein that flows to the liver, called the portal vein. Or, if a child is born without a portal vein or one that doesn’t work properly, a liver transplant provides a working liver and portal vein.
An MRI revealed Jett had a portal vein, but it was very small. Only a more comprehensive procedure could reveal if that vein would be able to supply blood to his liver, and it was unlikely that Jett would be a candidate for a liver transplant.
Drs. Ali, Griffiths, Reddy and other team members put their heads together and mapped out a plan. Dr. Reddy would do a test during his cardiac catheterization procedure (feeding a long, thin tube through a vein) to see if Jett’s portal vein could carry blood to his liver. If so, they would close the shunt and reroute blood flow through the portal vein.
His team even discussed the plan with an international panel of experts on portosystemic shunts. They agreed it was the best course of action.
“At first, I said, ‘Sounds great, trust y’all with my life,’” Victoria says. “But when they explained the risks, we pumped the brakes.”
The care team acknowledged that putting any baby under anesthesia comes with risks, and Jett’s health was fragile. They had a series of backup plans, including having the ECMO team on standby to provide life support, if needed.
A meaningful promise
Victoria and Jacob got a second opinion from another doctor who offered a simpler surgical procedure with fewer risks.
“It sounded too good to be true and it was,” Victoria says. “After they reviewed Jett’s chart in depth they backed out and said he was way too complex.”
That’s when Victoria asked for another care conference and posed the question that produced an endless pause: What would they do if it were their child?
“That’s one of the hardest questions because it's not just about medical expertise, it’s about your family and your beliefs,” Dr. Reddy says.
Dr. Reddy told Victoria and Jacob that he’d done several portosystemic shunts on very complex patients. But he’d never done one on a child with such complexities in other organs — and never on a child whose liver was outside their abdomen. In fact, the care team did not find any published reports in medical literature and few, if any, doctors had likely done this procedure on a child with these underlying conditions and anatomical differences.
“I could promise one thing: My full faith that our team would do the absolute right thing for Jett,” Dr. Reddy says. “If that meant a very complex procedure, we would not shy away, even if it took all day.
Jett's parents knew he would thrive if he got the chance.
The care team reassured me, validated my fears and were honest if they didn’t have the answer. They made me confident enough to have tough conversations, and I knew they cared about Jett as much as we did. So we said yes.
Victoria, patient parent
Tears of joy
Dr. Ali isn't usually there when a patient has a cardiac catheter procedure. However, she wanted to be there because Jett’s parents trusted her to be his biggest advocate. Jett’s surgeon, Natasha Corbitt, M.D., Pediatric Surgeon and Assistant Professor at UT Southwestern, came too.
“Everyone I knew was praying for Jett and everyone they knew was praying for him too,” Dr. Ali says.
They waited in the observation room as Dr. Reddy began the procedure. He spent several hours taking detailed images to map the abnormal blood vessel connections and temporarily blocking the shunt to see how Jett’s body would respond. The tests showed that Jett did have functioning portal veins and could safely tolerate closing the shunt. He consulted liver specialist Sindhu Pandurangi, M.D., and called in Drs. Corbitt and Ali before making a final call. Together, they confirmed that blood could flow through Jett’s portal vein and proceeded with closing the shunt.
“When Dr. Reddy closed the shunt, those vessels lit up like a Christmas tree,” Dr. Ali says.
Six and a half hours after the procedure started, Dr. Ali rushed to Victoria with tears of joy in her eyes.
“She said ‘they closed it’ and we were both sobbing,” Victoria says. “I have no doubt that a miracle happened in there.”
Dr. Reddy came out and greeted Victoria with a handshake. She gave him a giant hug.
“He stayed at Jett’s bedside until way past midnight and told me he’d be monitoring Jett’s vitals from bed that night,” Victoria says.
Love beyond measure
Jett’s care team watched for complications in the weeks that followed. Day by day, he got stronger.
After 334 days in the NICU, it was finally time to go home. Jett’s care team lined the halls to send him off and say goodbye with smiles and tears.
They were greeted by another parade when they got home. Friends, family and neighbors lined the street to welcome Jett.
“Jett gave me this look like ‘you’ve been holding out on me,’ and ‘this is what I’ve been missing?’” Victoria says.
While Jett’s family wishes he could have gone home sooner, they find comfort in knowing that he was surrounded by love during his time in the NICU.
“Jett was loved there beyond measure,” Victoria says. “He got more love in that hospital than we could have given him at home. Now he knows love like no other and that’s an incredible blessing.”
Learn more
Children’s Health is home to a Level IV NICU, which means we are equipped to care for babies with the most complex medical needs. Our team of experts work together to give each child the best chance of a healthier future. Learn more about our program.
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