This is the fourth post in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.
By Tracye Burgess
I had an almost perfect pregnancy. My water broke at 8:30 a.m. Sunday morning, on March 22, 2009. Nervous and excited at the same time, my husband got us to Methodist Germantown in 5 minutes; I was admitted and taken to Labor & Delivery. After a couple of hours of monitoring and receiving an epidural, things seemed to be going fine; then all of a sudden, the nurse noticed that my baby’s heart rate started dropping, she alerted the doctor things changed I had to have an emergency C-Section.
As I was being prepped to go into the OR, I could not help but to start crying because we had no idea what could be going wrong, all we knew he heart was dropping. At 3:08 pm our baby boy Andre (Aj) Burgess, Jr. was delivered via C-Section.
We knew something was wrong. He was in distress. His skin was blue, and he was immediately taken to the NICU (Newborn Intensive Care Unit to be seen by Cardiologist on call; Dr. Wetzel). After a while, Dr. Wetzel came to my room and spoke with my husband and me. He informed us that AJ had a Congenital Heart Defect and he was being transported by the Pedi-Flight Team to Le Bonheur for heart surgery. Our hearts dropped and to say that we were shocked was an understatement. But I knew my baby was in the best of hands and I was confident of the outcome because I worked at LeBonheur in the Heart Institute with a team outstanding cardiologist and cardiothoracic surgeons who care for children with congenital heart defects.
“Who would have thought my child would be a heart patient?”
All of a sudden, I became the parent and not the employee full of questions, concerns, thoughts and fears. As a parent, I was scared. For the first time, I wasn’t an employee. I was a parent. I understood immediately what parents feel.
“How did this happen?” “What did I do wrong?” “Is he going to be okay?”
I was very sad because I could not go with AJ because I was recovering from my C-Section, not only did I not get a chance to hold him in the delivery room, but I was not going to be able comfort, or hold him during this critical and scary time.
Once at LeBonheur, the cardiologist discovered that along with having a heart murmur, he had severe Pulmonary Valvular Stenosis which was obstructed causing the right ventricle not to be able to pump sufficient blood flow to his pulmonary artery which helps to maintain normal oxygen saturation. Hence the him being blue at birth (low oxygen levels in his blood). As result of this is what alerted the cardiologist that AJ required immediate attention and treatment.
When he was less than 24 hours old, I received a call from Dr. Waller (who I worked for)explaining to me what was going on with AJ. He needed my consent to repair the right ventricle of AJ’s heart by doing an invasive procedure called a balloon dilation in the Cardiac Cath Lab.
At 10 AM, Dr. Waller was able to perform the valvuloplasty. AJ spent two weeks in the CVICU (Cardiovascular Intensive Care Unit), as he was still having issues with his saturation. I was discharged and able to be with my baby three days after his birth. Seeing my sweetheart hooked up to all these wires, laying there helpless just made my heart dropped, but I knew that he would be OK and he was being well taken care of. I was unable to hold him at first, but when I was able to hold him close to my chest for the first time, I can’t express the words or the feeling.
He spent an additional week in PICU and he was able to be leave the hospital, he would continue to be monitored very closely and follow up with Dr. Waller.
At AJ’s follow-up appointment with Dr. Waller at seven-months-old, he saw that AJ was still having issues with the blood flow pumping correctly. Hearing this, I was devastated because that meant that AJ would have to go back into the Cath lab to have another balloon dilation. So just turning 8 months old, AJ was scheduled to have another valvuloplasty (balloon dilation) on November 8, 2009. Dr. Waller entered our room at the hospital, the look on his face was enough for me to know everything did not go as he planned and hoped. He broke the news to us that after two unsuccessful attempts at valvuloplasty procedure in the Cath Lab, AJ would need have open heart surgery to correct the problem with the blood flow to his heart.
My heart just shattered into a million pieces. No parent wants their child to go through this. But I knew God was in control and once again I knew the doctors would take care of AJ.
On November 9th, AJ had open heart surgery. Everything went well, he spent a week and a couple of days in the hospital. We are forever grateful to the team of the Heart Institute and I am thankful for worked there for 10 years. They are our family and my co-workers. It is a blessing to be able to share our story as a professional and as a parent as I have been on both sides of the table. To provide comfort to the parent who is all over the place about their child having to have heart surgery is an honor and a blessing. It feels good to say, I understand how you feel and share with them what we went through.
Today, AJ’s a happy, energetic eight-year-old 3rd grader. He attends Downtown Elementary. He enjoys school and having fun with his friends and family. He went to Cardiac Kids Camp for the first time last summer and can’t wait to go this summer. To look at him, you would not know what he has been through. He will eventually will need to have his valve replaced in a few years because he will outgrow the repair done at when he was a baby. Dr. Waller is sees him for his yearly follow-ups and watches him closely and I know when the time is right he will be well taken care of.
We are so thankful as parents of a CHD child to be able to share our story and bring awareness to our community. We are grateful for the American Heart Association giving us this opportunity.
Special thanks to Hendricks & Company for donating photo services for this project.