A little over a year ago, Robert and Christina Ryan couldn’t imagine their daughter’s future. They were struggling just to come to terms with her present as their baby lay fighting for her life in the Cardiovascular Intensive Care Unit (CVICU) at Cook Children’s Medical Center - Fort Worth. 

In early January 2023, an illness sent Dorothy “Dottie” Ryan to Cook Children’s Emergency Department where the Ryans learned their daughter’s heart was failing. Dottie was 2 months old at the time. While her illness was brought on by a common cold virus, its severity was exacerbated by a congenital heart defect known as ventricular septal defect (VSD).

A VSD is a hole in the wall between the two lower chambers, or ventricles, of the heart. In the United States, about 1 in every 240 babies are born each year with the defect, making it the most common heart defect in infants, according to the Centers for Disease Control. 

The presence of a VSD allows blood to flow abnormally between the two ventricles, impairing the heart’s ability to pump blood throughout the body and to the lungs. Large VSDs can cause too much blood flow to the lungs, leading to difficulty breathing and fatigue with exertion. 

Because a baby’s greatest form of exertion comes when eating, the presence of a large VSD can lead to poor feedings and inadequate growth. If left untreated, it may also cause irreversible damage to the lungs and to the heart. 

The Ryans knew before Dottie was born that she had a VSD. However, in many cases, the hole closes on its own in-utero or after birth, so they weren’t overly alarmed by the diagnosis. 

But an echocardiogram soon after Dottie’s birth revealed she had not one, but four, VSDs. Dottie would eventually need surgery to close the holes. Over the next few months, Dottie’s cardiologist followed her condition and progress closely, giving her time to grow and develop as much as possible before undergoing a complicated surgical repair.

“Having multiple VSDs is relatively rare, occurring in about 10% of VSD patients,” said Greg Barker, M.D., Dottie’s cardiologist at Cook Children’s Medical Center - Fort Worth. “Often small VSDs will close on their own while large defects need to be repaired. Patients with multiple VSDs often have small defects that ultimately close spontaneously or do not require treatment. So Dottie’s case, with multiple large defects requiring surgical closure, is quite rare, and quite challenging to treat, requiring a very skilled surgeon.”

The Journey to Surgery

The multiple defects meant Dottie’s heart struggled to pump efficiently on a good day. Add to that even a mild cold, like the one that sent her to the Emergency Department in January 2023, and you have a recipe for the heart becoming overwhelmed and unable to pump oxygen-rich blood throughout the body to support healing. Dottie’s heart simply could not cope with the increased workload necessary for fighting infection.  

“So we got admitted into the CVICU and that's when this journey started,” Christina said. “I remember the doctor telling us she’s in heart failure and we need to schedule surgery, but we had to let her get better from the cold first.”

Dottie did get better and was released from the medical center on January 18 to await surgery in February. But two days later, Dottie began having trouble breathing again and the family returned to the Emergency Department. Within 45 minutes of arriving, the Ryan’s baby girl was on a ventilator. 

The culprit this time? Three bacterial blood infections. 

“It was the hardest night of our lives,” Christina said. “But I felt like the team was amazing. Two cardiologists and the ER physician were there. I was so scared, but I was so thankful for that team that was saving her life in front of my eyes. I hope to never be in that situation again, but it was amazing to see all of these people who spend their whole lives saving children like Dottie. That whole night was miraculous.”

Over the next few weeks, Dottie’s condition improved again but she needed to remain in the hospital to continue the intravenous medications that helped fight infection and stabilize her heart. As the days went by, her heart needed more and more support, prompting doctors to schedule her surgery sooner rather than later.

The Best Gift

On the evening of February 22, 2023, which happened to be Christina’s birthday, Dottie’s physicians convened to discuss a surgical plan. That night, Christina took a rare break from the hospital to have dinner with her older children while her husband stayed with Dottie. While at dinner, she received an unexpected call with surprising news that moved her to tears. Dottie’s surgery was scheduled for the very next morning. 

“It was the best birthday gift ever,” Christina said. “To see this whole team of people mobilize 12 hours before surgery was amazing to me.”

On surgery day, many of the cardiac intensivists who cared for Dottie in the weeks prior stopped by the waiting area to visit with the family, with one taking a moment to pray with them. 

“Before they took her away to surgery it just felt like Dottie was so important,” Christina said. “Even though they see hundreds, if not thousands, of kids every year, in that moment they saw so much value in her little body and showed she was worth fighting for. We already knew that, but it was amazing to see these doctors and nurses value and love her, too.”

During the 8-hour surgery, Vincent Tam, M.D., medical director of Cardiothoracic Surgery at Cook Children’s, successfully patched three holes in Dottie’s heart. The fourth, which could not be patched, closed on it own a few months after surgery. 

Dottie spent the next few weeks at Cook Children’s recovering from surgery. Because she stopped taking a bottle or nursing while on the ventilator before surgery, she needed a feeding tube for adequate nutrition. Shortly after an additional procedure to place the feeding tube, Dottie was able to go home in March 2023. 

Little Girl, Big Smile

Although a tiny infant at the time, Dottie made a big impact on the staff at Cook Children’s. She’s known for her smile, even attempting to grin while on the ventilator. 

“As Dottie’s condition improved, we learned her sweet smile and endearing demeanor which made caring for her such a joy,” said Brynli Clayton, BSN, RN, CCRN, CVICU nurse supervisor at Cook Children’s. “Working in a high acuity environment our staff knows all too well the reality of patients who do not get better, which makes the ones that do that much more special. Watching Dottie continue to grow, when she comes by for visits, and hearing updates about her development seals in our minds that the work we are doing matters.”

To celebrate Dottie’s first birthday, the Ryan family collected pacifiers and donated them to the CVICU in recognition of the kindness the family says they experienced at Cook Children’s.

Now 16 months old, Dottie is in full toddler mode and doing her best to keep up with her siblings, 5-year-old Eddie and 3-year-old Lucy. She still requires nutrition support but is learning to eat on her own more and more each day. 

And the future the Ryans couldn’t imagine for their daughter a year ago is now full of hope and as bright as her signature smile.

“Thankfully, Dottie has had an excellent repair,” Dr. Barker said. “While there are still things that we are watching, I expect her to do very well and be able to have a normal, healthy life.”

Through it all, the Ryans learned to cherish the triumphs, no matter how small. 

“I’d encourage other families facing a challenge to find joy in and celebrate the tiny victories because those can give you tremendous hope,” Christina said. “They did for us.”