By Tracey Gleason, mother, donor and volunteer
Published on February 23, 2016
When I was pregnant with my son, Tommy, I had no reason to believe it would be anything other than a normal birth. During my prenatal checkups everything was looking good, and we had no history of any type of birth defects in either my husband’s family or mine. So when I chose a hospital for delivery, I chose one that I thought would be most comfortable for me. Big mistake! I’ve since learned that one should always hope for the best, but plan for the worse.
When Tommy was born, everything still seemed fine, and he appeared to be a strong, healthy baby boy. It wasn’t until several hours later that he started turning blue, and we knew something was terribly wrong. His body wasn’t getting any oxygen. Our hospital was not equipped to handle the situation, so we were transferred to a hospital that was. This was our first introduction to Advocate Children’s Hospital (at the time named Hope Children’s Hospital). In my memory, I see a team of literal superheroes, dressed in special uniforms, coming in to save my baby boy. This, of course, was the transport team. They were so calm and professional that they made me feel safe in letting him go—even though my newborn had tubes all over him and was encased in an incubator so I couldn’t touch him.
While my husband went with the transport team, I stayed behind to discharge myself from the hospital against doctors’ orders. This was only eight or nine hours after giving birth. By the time I arrived at Advocate Children’s Hospital, specialists had already been called in, and we had our first meeting with cardiologist, Dr. David Roberson of Advocate Children’s Heart Institute. Again we were meeting with someone who made us feel that this was a situation that could be handled. Yes, it was very serious and there would be no guarantees, but Dr. Roberson calmly and knowledgeably explained my baby’s heart defect and the plan of action that was needed. Tommy was born with “transposition of the great vessels”, which meant the two main arteries leaving his heart were reversed. So blood returning to the heart from his body was bypassing his lungs and being pumped back to his body without receiving any oxygen. Tommy would stay in the Pediatric Intensive Care Unit until he would have his open heart surgery, performed by Dr. Michel Ilbawi.
We then met with Katie Wittle, an Advanced Practice Nurse, who would be working with Dr. Ilbawi during Tommy’s surgery. She thoroughly explained the entire procedure, pausing for any questions or concerns we might have about any of the steps. Katie was so patient and caring, one would have thought we were the only family with a child in need of surgery by Dr. Ilbawi. We were told that not too long ago, this type of surgery was done a little differently and was not so successful. But with research, a new technique was developed, and the prognosis was very good. Once again, our fears were addressed, and we felt safe and secure leaving our baby in their hands.
Tommy had his “arterial switch” surgery when he was only 6 days old, and everything went as planned with no complications. I know doctors don’t like to hear comparisons like this, but to us, Dr. Ilbawi is like a god. He saved our baby, and we will be forever grateful. Tommy spent another nine days in the hospital in the Pediatric Surgical Heart Unit (PSHU). We were almost always with Tommy; my husband even spent most nights sleeping at the hospital with him. There were only a few times that we were not there, and we were only able to do that because the phenomenal nurses in the PSHU gave us the confidence that Tommy was receiving the utmost professional and compassionate care. He came home when he was only 15 days old. After having open heart surgery!
When people hear my story for the first time, they say, “How did you get through such an ordeal?” It was definitely traumatic! But as every parent knows, you work your way through a situation and deal with everything as it comes. Fortunately for us, we had a lot of help along the way. Through every step of this harrowing experience, we encountered warmth, compassion, professionalism and expertise from every doctor, nurse, and staff member we met. We felt assured that everything was going to be okay by doctors who were expert in their fields, excellent nursing care and communication that was open and constant.
During our experience at Advocate Children’s Hospital, we realized not everyone was as lucky as us. Yes, I say lucky even though our 6-day-old newborn had to have open heart surgery. Our son’s surgery seemed almost minor compared to some of the stories we learned about during, and since, our experience, and we knew that we would do anything we could to show our gratitude for the care our son received.
When we were asked to join a group called Hearts for Hope, it was absolutely a no-brainer. Hearts for Hope is a volunteer group made up of grateful patient families and local community members dedicated to supporting programs, physicians, patients, and families of Advocate Children’s Hospital. The group has contributed to the renovation of the pediatric emergency room, helped purchase equipment for the pediatric transport team and new furniture for patient rooms, and provided funds for critical research projects. The group also hosts bimonthly patient parties, funds Open Heart Magic, and supports Child Life services. My husband and I have been involved with Hearts for Hope for almost ten years, with a particular emphasis on the annual golf outing every June. Over the years, the hospital has made so many advancements, and we’d like to think that we’ve had a small part in making some of that happen.
Today our beautiful son, Tommy, makes us proud every single day. He is an outstanding athlete, terrific student, and an amazingly kind young man. He leads an unhindered, normal, healthy life just like any of his friends. We know that we would not have this true gift in our lives without everyone we encountered at Advocate Children’s Hospital, and we will continue to work with Hearts for Hope and the Advocate Charitable Foundation to forever express our gratitude.
Advocate Charitable Foundation is grateful for the support of grateful families like the Gleasons. Learn more about making a donation or getting more involved at Advocate Children’s Hospital.