Faces and Places: Teenage girl keeps a positive spirit despite the need for a new heart
In spite of a rare diagnosis when she was a newborn baby, Abigale Buckner has led an enjoyable and active lifestyle throughout her young life. One of her favorite activities is to participate in is cheerleading. From the time she was in preschool and kindergarten, she participated in cheer clinics with the high schoolers and through her church. In junior high she joined the cheer squad for the basketball team. Although now, unlike many 14 year olds, she is now living with the need for a new heart.
This first signs of something not being right came not long after Abigale was born. When her mother was holding her she stopped breathing and her temperature was low. They soon found out that her heart was enlarged and her lungs were filling with fluid. The pediatrician had her sent to Children's Hospital the same day and her mom was released from the hospital so she could go with her. At St. Louis Children's Hospital, Abby spent her first day and the next few days in the world hooked up to numerous wires and IVs as well as a tube to help her breath. The day after she arrived at Children's Hospital she was diagnosed with Ebstein's Anomaly with Atrial Septal Defect.
Despite previous belief of doctors that she would have to spend the first few months of her life in a hospital, she was able to go home when she was five days old. "They were expecting her to be there for a while and from the beginning she has been blowing past everything the doctors have said about her. They had prepared us to be there for a couple of months and she came home after five days," said Ginny Buckner, Abigale's mother.
This kind of birth defect contributes to less than one percent of congenital heart disease. At the time the doctors thought she would need surgery later on in life to correct the problem. However, this was not the case.
This last October Abby started showing signs of supraventricular tachycardia (SVT), which is when the heart beats at a very high rate for a reason other than exercise, in physical education class.
Abby was diagnosed with SVT when she was eight years old. She was also diagnosed with Wolff- Parkinson White Syndrome. Her tricuspid valve does not function and there is a hole in the septal wall. The left side of her heart tries to compensate for the right side of the heart that does not function the way that it should.
She had several occurrences of SVT, even one that required a trip to the emergency room. This led to Ginny contacting a cardiologist in December for tests.
Previously, in June of 2015, Abby's doctor wanted to test her exercise tolerance to make sure she would be able to participate at a high school level. Then when the stress test was performed again in December of 2015 there was a significant change in Abigale's exercise level and her exercise tolerance had drastically dropped. They performed tests on her blood output and performed an ECHO test, which showed that there was decreased function in the right side of her heart.
In December, Abby was diagnosed with heart failure. After performing, tests her doctors discovered that surgery on the tricuspid valve and trying to close the hole in her heart to prolong the usefulness of her heart, was not an option. The best thing for Abby is for her to receive a new heart. Abigale's cardiologist consulted with Cardinal Glennon and the Mayo Clinic in Rochester, Minn. as to whether or not she would need a heart transplant. They all agreed that she was in need of one.
Since she was diagnosed with heart failure, Abby has had to abstain from attending school and has to be homebound for the most part. She ventures out with her family, however, her mother is diligent in making sure her precious daughter stays well. They have to be careful about who visits Abby. Anyone showing any signs of sickness or who has recently been sick is asked to wait a few days and get better before they come to visit. If Abby shows any signs of sickness when the opportunity for a new heart arises then she would not be able to receive the heart.
When her friends are well they get to visit with Abby and they also get to communicate through social media and have even got to have sleepovers with her friends.
Abby does not consider herself to be a victim and has kept a positive outlook during this time. "She is not letting this defeat her," said Ginny Buckner.
She has also helped her mom realize her own strength. One day when Abby saw her mom crying she told her to not cry for her. "She told me if you are going to cry, you cry for yourself because you will be stuck down here. If something happens to me, I will be with Jesus," Buckner recalled.
Ginny told of how Abby has impressed doctors so far because she does not physically show signs of heart failure. She has a primary cardiologist but because the Children's Hospital is also a learning hospital she also sees other doctors.
Just looking at Abby one would not realize that she is in heart failure. "She looks so healthy and acts so healthy, but when you look at her ECHO gram, stress test, EKG and listen to her heart with stethoscope...you really have to look inside to see something is wrong with her," said Buckner.
On New Year's Eve Abby had to have TEE (transesophogial echocardiogram) and a MRI. These tests were performed so the doctors could get pictures and measurements of her heart.
After the TEE she had a difficult time waking up from the anesthesia and it made her sick. She also became dehydrated from being sick and had to be given fluids. However, she powered through and instead of being wheeled into have her MRI done, she walked. "Her doctor said he loved the fact that she walked in here. She wasn't wheeled in in a wheelchair or wheeled in on a table, she got up and walked in here. That is the fighting spirit that is going to get her through this," said Buckner.
She had another TEE test on Feb. 8 along with a cardiac catheterization and an ablation for the Woolf-Parkinson White syndrome, which was unsuccessful. Abigale previously had two ablations after being diagnosed with WPW and SVT. One in 2010 and one in 2011, but both were unsuccessful.
On Feb. 18 Abigale was admitted to the hospital in order to have a PICC line put in. "This delivers medication directly to her heart via the Superior Vena Cava, a large vein in the heart. She was there for a week as they introduced Milrinone into her system and they did all of the necessary testing for donor matching. While she was there she spent her time making cheer bows. She quickly became known as their bow-making cheerleader," said Buckner. Between doctor appointments, nurse visits and school work, Abigale takes the opportunity to make bows that she also sells.
Every week Abby has to go to the Children's Hospital in St. Louis. She has a PICC line that delivers medicine directly to her heart and wears a defibrillator vest because the medicine can cause her heart rhythm to go up or down. She has blood drawn every two weeks to make sure she has not developed any antibodies to antibiotics.
She is currently on the transplant listed as a 1A status, which is top priority but after March 22, because the allocation process changes, she will be changed to a 1B status on the transplant list, which is still high priority, however, the difference is that with 1A is someone that is in the hospital that is too sick to come home but Abby is able to wait at home.
While she is at home the equipment needed for Abigale is kept in a backpack. She also has a pump and her medicine along with the defibrillator vest that monitors her heart rate. Her family checks her blood pressure as needed and a nurse comes every week to her home to change the PICC dressing. All the while Abby patiently waits on a heart so she can once again cheerlead.
Abigale will also be part of a pre/post transplant study performed by Washing University. She will be one of 50 children studied. This study will involve a minimal amount of blood being drawn at various times. This study is being done to determine what is contributing to so many children needing heart transplants recently. It will also help to determine medications and immunosuppressants regimes that are most effective for pre and post transplant.
Her family also recently were informed that Abby's heart will be studied by pathologists. "It is good to know that my child will be studied and that her story will educate future cardiologists and cardiothoracic surgeons about the disease," said Buckner.
While the Buckners are busy taking care of their daughters, Abigale and Kimberly, the community is also helping by holding a benefit to raise money to help fund the family's weekly trips to St. Louis.
Debbie Ringstaff and Brian Keathley will be hosting Back Roads Poker Run on April 16 at the Van Buren YCC. Food will be served starting at noon and a live auction will be held at 5 p.m.
There will be a poker run and a five card draw along with a mud run obstacle course and a quilt raffle. If you would like more information you may call Cathy Alford at 573-323-8958, Debbie Underwood at 573-561-4954, Brian Keathley at 573-718-0030 or Mike Hoerner at 573-870-0410.