Winne, Trace and Elijah are all completely different. They are different ages, live in different places and lead completely different lives. However, they share a connecting thread despite their three separate stories — congenital heart disease (CHD). Even more specifically, they all have a shared experience within CHD. They have all had the Blalock–Taussig (BT) Shunt.
The BT Shunt is a procedure that is often done as a “hold over” measure. It is normally put in to give a child time to grow and allow their lungs to mature before the Glenn or Hemi-Fontan heart surgery. Learn more about the BT Shunt procedure itself here.
The BT Shunt is life-saving, but also can be unstable and potentially life-threatening. It is a prime example of how surgeries for CHD are a temporary “repair” but not a cure. The families of Winne, Trace and Elijah know this all too well.
Winnie was three weeks old when she got the BT shunt. The surgery went well, no surprises during the procedure. However, things changed an hour out of surgery. Winnie experienced a pulmonary crisis that left her shunt clogged with a blood clot. She was put on ECMO, often referred to as the highest form of life support, for six days. The clot was removed, her heart was temporarily stable and she was taken off ECMO. She ended up keeping the BT shunt for a year after the initial chaos before her next surgery. “This little piece of tube bought us the time we needed for her to gain weight and strength before an even bigger surgery…It’s crazy to think a little tiny tube sustained her life for so long but we’re so grateful for the creators of the techniques used to save our baby…” Winnie’s mother said.
Trace got his BT shunt at eight days old. After the surgery, Trace’s mother walked into his hospital room to find Trace purple. His shunt had clotted. His heart surgeon had to open his chest and perform the surgery right there in his hospital room. It was so urgent there was no time to worry about getting an operating room ready. Roughly eight hours after Trace’s first open heart surgery, he needed a second. The medical team ended up removing the BT Shunt completely and going a different route. The BT shunt was not compliant with Trace’s anatomy causing the need for a complete shift to a central shunt to hold him over until his next surgery.
Elijah was about four months old when he received the BT shunt, after the stent he had put in after birth failed him. The BT shunt was supposed to last him a year. After using heart imaging techniques, it was clear that the shunt was way too small. Another surgery was required and the BT shunt was removed. “Life with the BT shunt was scary, I just felt like Elijah was so fragile. I’m thankful that it bought him time, however our team made it clear that the BT shunt is very unstable,” Elijah’s mother said. “I hope someday medical science advances to provide safe options other than the BT shunt or methods to make [the BT shunt] more stable. I hate to say it was a negative experience because it saved my son’s life, but if there [were more] options I definitely would have wanted to explore them.”
These three cases vary but all prove that further advancements for CHD treatment are needed. The BT shunt can be a blessing and a curse. It prolongs lives but can also endanger them. Before it’s innovation, children were dying at alarming rates. However, just because those rates have gone down does not mean everything is perfect. Winnie, Trace and Elijah are just a few stories showing the ups and downs of the temporary fix that is the BT shunt. We must keep advancing, innovating and pushing towards a cure.
Project Heart is currently funding an ongoing research project with Dr. Tom Doyle to develop a stent designed to keep a vessel known as the patent ductus arteriosus (PDA) open. This stent could allow some infants to avoid open-heart surgery and the BT Shunt entirely and instead have a less invasive cath procedure in the first days or weeks of life. What a wonderful day it will be when instability is a thing of the past! We are always aiming to push the limits and continue to work towards a cure for CHD.