ORLANDO, Fla. – A Central Florida 1-year-old is scheduled to head to St. Petersburg with her mother on Monday to Johns Hopkins All Children's Hospital and be admitted as she awaits her heart transplant.
Scarlett Jaycocks is one of the many thousands on the heart transplant wait list in the United States.
In 2016, 3,190 heart transplants were performed in the United States -- 130 of them were patients under the age of 1 and recipients 1 to 5 received 101.
Of those transplants, 243 were performed in Florida with 15 of them went to infants, and six to children ages 1 to 5.
The United Network for Organ Sharing (UNOS) is a nonprofit that has a government contract with the U.S. Health and Human Services department to manage the transplant system for the entire country. It is based in Richmond, Virginia.
Anyone in the United States who is in need of a transplant has to undergo a series of medical and physiological tests at a transplant center to be considered. These are not the only factors that determine a candidate's eligibility. The patient's medical history, history of compliance to medication and doctor recommendations are also factored in for someone to be considered a good candidate for an organ transplant.
Also considered are social support network and ability to take care of transplanted organ, including having a way to cover immunosuppressant drug costs.
A transplant committee at the transplant hospital comprised on medical personnel (such as surgeons, physicians, transplant coordinators, social worker, etc.) meets to determine which patients would be good transplant candidates. Each transplant hospital has its own committee to determine a candidate's eligibility.
The Organ Procurement Organization works in two ways: inform to increase the amount of organ donations and coordinate the donation process.
In the donation process, the OPO evaluates potential donors, checks donor registry in each state, initiates the donor conversation with family members, matches donors and recipients, finds match lists of specific donors and is responsible for scheduling the recovery and transportation of donor organs, the U.S. Government Information on Organ Donation and Transplantation states.
Once a patient is considered a good candidate for a transplant, all of his or her information is entered into the UNOS computer system by the transplant center. Medical criteria determine if a patient’s medical urgency status. For pediatric patients, 1A is the most critical, followed by IB. If a patient does not meet the medical criteria for 1A or 1B, he or she is considered to be in status 2. The diagnosis or types of treatment a patient is receiving determines the medical urgency of his or her transplant.
For patients who need thoracic organs, like the heart or lungs, geography (the proximity of the donor hospital to transplant candidates’ hospital) plays a role determining where the new organ goes.
For any other organ transplants, this is determined by region because other organs can stay viable longer. Because hearts and lungs have less time before they must be transplanted, the system first matches the organ with the sickest patients in a 500-mile radius of the donor’s hospital.
"The organ list is not like standing in line. Your medical information is in the computer system with everyone else’s who needs a transplant," Anne Paschke, UNSO media representative, told News 6. When a donor organ becomes available, a ranked list is generated of the sickest patients in the area who are compatible with that donor.
For the transplantation of heart and lungs, size and weight are a factor for the transplant recipient.
The first people on the list for a heart from a donor under 18 are pediatric patients in the highest medical urgency status which is 1A, in Zone A (500-mile radius) and with the same blood type. The next people that would be considered would be pediatric transplant candidates with 1A status with a compatible blood type.
“If no one accepts the donor organ, then adults in the donor service area are considered, and then it 1B pediatric patients in Zone A are considered,” Paschke told News 6.
When someone dies, the Organ Procurement Organization is notified. The OPO checks to see if the person has designated their wishes to be a donor. If not, they will approach the family to decide.
An organ donor donates an average of three-point-two organs upon death, Paschke told News 6.
However, the donor has to die in a certain way for the organ to remain viable for donation. Oxygenated blood must continue being pumped to the organs.
For a pediatric patient who dies, the parents make the decision of whether the organs are donated.
The OPO has access to the UNOS database to input the medical information to match the donor with a recipient.
The OPO uses UNOS’ computer system to run a match for each transplantable organ. The computer system rules out incompatible candidates for the organ being matched and lists all other candidates in rank order according to organ allocation policy.
The Organ and Procurement Organization is staffed 24 hours a day, 365 days a year.
After the OPO runs a match, it notifies the transplant hospital electronically, that an organ is being offered to their patient. When a transplant hospital accepts the organ, the OPO coordinates OR time. While a donor heart is being procured, the transplant team preps the recipient to receive his or her new organ.
The window from procurement of a heart to transplantation is four to six hours.
UNOS provided News 6 with these statistics on the number of pediatric transplant candidates waiting for a heart.
Nationally, there are 4,012 patients that need a heart transplant. Of those, 61 are less than a year old and 113 are 1 to 5 years old, Paschke said.
Of the 61 that are less than 1 year old, 29 are heart status 1A and 9 are heart status 1B. Six of them are heart status 2. Of those that are 1 to 5 years old, 37 are heart status 1A, 13 are 1B and 25 are heart status 2.
Only two hospitals in Florida have any children under 1 listed for a heart transplant. Johns Hopkins All Children’s Hospital has 2 listed and UF Health Shands Hospital has 6. There are 12 pediatric patients ages 1 to 5 listed for a heart; 7 at Shands, 4 at Joe DiMaggio and 1 at Jackson Memorial.
Of the 12 children from ages 1 to 5 listed for a heart in Florida, 8 are Status 1A, Joe DiMaggio Children’s Hospital in Hollywood, Florida has 3, Johns Hopkins All Children’s Hospital in St. Petersburg 0, University of Florida Health Shands Hospital in Gainesville 4, Jackson Memorial in Miami has 1.
There are five 1A patients in Florida who are less than 1, four at Shands and one at Johns Hopkins, Paschke told News 6.
Johns Hopkins All Children’s Hospital has the only patient less than age 1 at heart status 1B in Florida. The only child ages 1 to 5 with heart status 1B is at Joe DiMaggio.