Two days shy of 26 weeks gestation, Amy & Daniel Jodoin received devastating news during a routine visit to monitor their twin girls. During the echocardiogram, the tech noticed something wrong and asked the doctor to take a look. At that time, Amy was immediately sent to Shands at the University of Florida Labor and Delivery unit to be assessed by a cardiologist. Upon further testing they found that one of their babies, known to the doctors as baby A, had a significantly enlarged left ventricle. There was no explanation as to the cause making it more difficult to accept the news to follow.
The team at Shands prepared Amy for a possible emergency delivery. The prognosis for “Baby A” was very grim, the baby would most likely not survive in utero longer than a few days. The team of doctors informed the Jodoins’ that there was nothing they could do at that point. However, “Baby B” appeared to be in perfect health. While grateful for the news of one healthy baby, this posed a new challenge. Exhausted and heartbroken the couple was sent home to wait for their unborn daughter to pass …or to wait for a miracle. Over the course of the weeks and months that followed “Baby A”, named Addilyn Grace, would defy the odds by continuing to grow and develop normally, with the exception of her heart. Amy and Daniel, not embracing the doctors’ words, were going to fight as long as Addilyn was.
By 28 weeks the cardiologist was finally able to get the images needed to diagnose Addilyn with critical aortic stenosis, tri-cuspid regurgitation, mitral valve regurgitation, and pulmonary valve stenosis. The stensed aortic valve had caused the left ventricle to be severely enlarged. With Addilyn defying the odds, her cardiologist enlisted an interdisciplinary team consisting of transplant doctors, cardiac surgeons, and the director of the neonatal intensive care unit to search for options. The team discussed several options including a number of surgeries or heart transplant, which all came with an “if” factor as well a number of risks. At the end of the discussion Amy and Daniel were told there was little chance any of the procedures would be successful.
With transplant a viable option, the team decided, at 34 weeks gestation, Addilyn would be placed on the fetal transplant list. This meant, should a heart become available after 34 weeks, a c-section would be done and Addilyn would go immediately to the OR for the transplant. Although a new heart didn’t become available and this wasn’t an option for Addilyn, hopefully more facilities will utilize the fetal listing and a child can be saved.
At 37 weeks Amy was admitted to Shands for continuous monitoring with a planned delivery date at 39 weeks in order to extend the time on the fetal transplant list. Because of complications prior to 39 weeks gestation, Addilyn Grace and Ainsley Rae made their appearance at 10:00 and 10:01 AM on May 10th. On day one of life, Addilyn was added to the national transplant list as 1a,urgent status.
At birth, an entire team of doctors, nurses, and other clinical staff were prepared for a critical baby that had been given a “slim chance” of survival. However, they were given a baby that did not require any support. Once again Addilyn, the baby that there was nothing that could be done, given a slim chance to live, and going to need unmeasurable amounts of support, defied the odds against her. Addilyn would have her aortic valve ballooned at just 2 days old and transferred to the pediatric cardiac intensive care unit. Her left ventricle showed immediate improvement after the balloon which would end up diminishing in the days to follow. Addilyn Grace is still in the congenital heart unit at Shands, 48 days old and waiting on the perfect heart. She is on a ventilator and medication to help the heart perfuse the body.
As the days turn into weeks, Amy and Daniel remain hopeful that they will receive the news that a heart has become available for Addilyn. One thing both Amy and Daniel have struggled with is knowing that for Addilyn to live, other parents will lose a child. They pray continuously for a new heart for their baby and for the donor’s family. “We know God has big plans for Addilyn,” Amy and Daniel proclaim. “Going through this has given us a new perspective on life. The small things that seemed so significant now seem so trivial.”
Addilyn’s journey has inspired Amy and Daniel to help educate others about organ donation and they encourage you to consider registering as a donor.
More Organ Donors are Needed
In the United States, there is a large shortage of organ donors. Those on the organ donor transplant list can be waiting anywhere from several months to years. A shocking number of patients on the waiting list die every year. You can help save lives by registering as an organ donor and spreading the word to your family and friends.
One donor can make a significant difference in multiples people’s lives. It’s important to know the impact you can make by registering as an organ donor. One day it could be you who needs an organ transplant.
Every 10 minutes, a person is added to
the national organ donation waiting list, which currently adds up to a total of more than
The following numbers indicate the number of patients on the organ donation waiting list as of the date this article was written:
Kidney: 101,653 people
Liver: 15,241 people
Heart: 4,194 people
Lung: 1,584 people
Pancreas: 1,063 people
Approximately 21 people die every day
waiting for an organ.
Help Improve These Numbers
Registering as an organ donor will improve these statistics by lowering the number of people waiting for an organ.
As a registered organ donor, your donation has the potential to save or improve more than 50 lives. One donor can provide: Kidneys, Pancreas, Liver, Lungs, Heart, and Intestinal organs.