Frankie’s Story

Frankie of White Lake, Michigan, was the precious first child of Erin and Frank, born in July of 2014. An ultrasound at 20 weeks into Erin’s pregnancy revealed Frankie had a heart condition that shattered their world with the realization that Frankie may have serious life threatening birth defects and could possibly not survive.

Frankie was diagnosed with hypoplastic left heart syndrome (HLHS), a complex cardiac birth defect that affects the structure and normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. Out of the two lower pumping chambers, the left chamber is poorly developed. The two valves of the left heart are abnormal and do not open wide enough to allow normal blood flow through them.

“We did not know if the pregnancy would be viable and what his chances were of surviving after he was born,” an emotional Erin recalls.

Erin and Frank’s hope turned a corner when they were referred to Children’s Hospital of Michigan for fetal heart care and consulted with Yamuna Sanil, MD, a pediatric cardiologist at Children’s Hospital of Michigan.

“Before we went to Children’s Hospital of Michigan, we were not given much hope for Frankie. We were so scared with so many emotions and unknowns. That all changed when we met Dr. Sanil. We thank God that we were matched with her. She explained HLHS in terms we could understand, while comforting us and giving us hope. During my pregnancy, we received fetal ultrasounds and the fetal echocardiography department gave us the invaluable opportunity to make the best care plan possible. This was essential to the success of Frankie’s first open heart surgery at 5 days old,” she says

A fetal echocardiogram, an ultrasound of the baby’s heart, can show problems with the structure and function of the heart and how well the heart is pumping.

Dr. Sanil explains that fetal heart care provides crucial information to carefully monitor the development of the baby’s heart and to formulate a treatment plan after birth to optimize the baby’s chance of survival.

“Fetal diagnosis of complex congenital heart defects allows the family time to mentally and physically prepare for the challenges ahead. We feel fortunate to have the opportunity to offer our services to our patients before they are born and collaborate with our maternal fetal medicine colleagues at DMC Hutzel Women’s Hospital.  After delivery, we are able to seamlessly continue to care for the newborn and due to the close proximity of our two centers; the special bond between mother and child is maintained and encouraged during the critical early days,”  says Dr. Sanil.

Erin gave birth at 41 weeks into her pregnancy and Frankie had the required three open heart surgeries in a two year period at Children’s Hospital of Michigan to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right lower chamber becomes the main pumping chamber to the body.

Dr. Sanil explains the surgeries do not cure hypoplastic left heart syndrome, but help restore heart function and blood circulation.

“Typically, patients with hypoplastic heart syndrome require a series of three surgeries that occur before they are three years old.  While many babies now survive with this heart defect, they require lifelong monitoring and care by a pediatric cardiologist.  I feel fortunate to be able to follow these special little warriors from the time they are in the womb to adulthood.  I am always inspired by the strength and love that radiate from families like Frankie’s,”says Dr. Sanil.

Today, Frankie has a smile that lights up the room and is an active boy who loves school, sports like baseball and karate and being a big brother.

Erin and Frank are thrilled with how far Frankie has come in his treatment. They say Frankie embraces his scar and considers his super hero heart his special power. They also emphasize they will never be able to thank Dr. Sanil enough as well as the PICU and the entire cardiology and cardiovascular surgery team at Children’s Hospital of Michigan for the life-saving treatment and continued care that Frankie receives. 

“From the first fetal echocardiography, Dr. Sanil has been with us every step of the way even when Frankie needed treatment other than his heart condition. Frankie currently needs follow up cardiology visits just once per year. As Frankie gets older we look forward to him becoming more aware of just how much Children’s Hospital of Michigan did and continues to do for our family,” Erin says.

For others going through a similar situation Erin add that support groups are important.

“It has been extremely helpful to find other families and supports groups with similar heart issues. The bond that is shared between cardiac families is so unique and special,” she says.