Baby Riley Grissom's Life Saving Heart Surgery

On July 15th, 2022, my brother and sister-in-law, Paul and Tracey, welcomed their precious twins, Riley and Emery into the world. Baby Riley was diagnosed at 12 weeks in utero as having a heart defect. It was not until he was born that the diagnosis was able to be confirmed. Riley has several very complex heart defects. He has a very large maligned Ventricular Septum Defect, several smaller ventricular septum defects, a large atrial septum defect and partial anomalous pulmonary veins. This means he has a large hole and several smaller holes in the bottom of his heart. He also has a large hole in the top of his heart. Riley’s pulmonary veins that carry his oxygen-rich blood from the lungs to his heart are not draining in the correct place.

Both Riley and Emery have already faced many challenges. Riley spent 140 days in the cardiovascular intensive care unit. He was on a ventilator for 35 plus days, has fought several serious infections and received a lifesaving open heart surgery for a pulmonary band placement. As Paul and Tracey dealt with Riley’s complications, they also were faced with sweet Emery’s challenges. Emery has also been diagnosed with a large ASD which means she has a large hole in the top of her heart that will need to be surgically repaired before she is 3. Since she was born, Emery has also spent several weeks in the hospital.

Where We Are Today

Paul and Tracey knew that Riley would need another open heart surgery to surgically repair his heart so that he could live. They were told it would be when he was older, stronger and bigger.

Last week, they were given the news that because of Riley’s condition, he would need the surgery within two months. We are beyond blessed that Riley has been accepted by the Boston Children’s Hospital Cardiac Program. Paul and Tracey have made the decision to go to Boston due to the complexity of the defects and the technology and success they have had with these types of repairs. Paul and Tracey have just been informed that the surgery has been scheduled for March 6, 2023.

How You Can Help

Needless to say, the expenses are going to be monumental. Beyond the unfathomable medical expenses, Paul and Tracey will also incur travel, housing, transportation, and food expenses. In addition, sweet Emery will have expenses as she faces her own medical challenges.

I humbly and graciously ask for your support for this precious family. My brother and sister-in-law have already gone through so much these past few months. Their strength is inspiring. Any help that you can give will be so appreciated. They will face much more in the months and years ahead. My hope and desire is to alleviate some of their financial worry so that they can focus their love and energy on these sweet babies and Riley’s recovery. And please, hold Paul, Tracey, Riley and Emery close in your thoughts and prayers. Thank you so much.

Riley’s Journey

• Riley has several very complex heart defects. He has a very large maligned Ventricular Septum Defect, several smaller ventricular septum defects, a large atrial septum defect and partial anomalous pulmonary veins. This means he has a large hole and several smaller holes in the bottom of his heart. A large hole in the top of his heart. His pulmonary veins that carry his oxygen-rich blood from the lungs to his heart are not draining in the correct place.

• Riley has spent 140 days in hospital

• Riley has spent over 35 days on a ventilator

• Lifesaving pulmonary band placed at the end of August.

• Surgery scheduled for March 6, 2023. Surgery at Boston Children's Hospital due to the complexity of the defects and the technology and success they have had with these types of repairs.

• Riley will be in Boston, MA roughly 1 month. Tracey will be staying the whole time but Paul will only be there for surgery and will have to go back to Jacksonville to work and be with Emery.

• Paul and Tracey will have to rent an apartment or stay in a long-term hotel. Tracey will have to stay at least a month.

• Tracey will have to Uber or take a taxi while in Boston. Roughly a taxi or Uber can be $40 round trip to and from the hospital.

• With the severity of the closer of the VSDs, ASD and the removal of the existing pulmonary band Riley will have to have another surgery to fix the “plumbing” issues with his pulmonary veins in the next 2 to 3 years. It is very risky to do all of it at one time and he needs to get bigger.

• Riley goes to feeding therapy, physical therapy, and occupational therapy once a week which all require separate copays.

• He sees Cardiology, Pediatrician, and Gastrointestinal doctors all once a month. Each requiring a co-pay.

• Riley is 24 hour continual fed via NG tube right now. He does not eat by bottle.

• Riley is on several medications several times a day with high co-pays.

• Riley’s formula is almost $70 a can and insurance will not cover it.

• Twin sister Emery has also been diagnosed with a large ASD. She has a large hole in the top of her heart that will need to be surgically repaired before she is 3.