When you are going to have a baby, everyone tells you that you will be tired, confused, and at times scared. What you don’t know is the heaviness you feel in your chest that would come the first time you look into those big eyes. This heaviness is even greater when the doctors come back from standard testing and tell you there is a problem.
We were told by the cardiologist on staff where I delivered that my son had a heart defect, but that the defect was common. He had a large hole in his heart that would need to be monitored and if it did not correct itself, it would need to be repaired in the catheterization lab sometime prior to starting school. The word common and the “potential of it correcting itself” made me feel hopeful.
The first year was hard… amazingly hard. He had all of the common things that a baby who attends daycare has: colds, ear infections, constant runny nose, etc. However, his illnesses always seemed to last a little too long, or was worse than the other kids. There were Emergency Department visits, countless antibiotics and some sleepless nights. Through it all, he remained a happy, content baby so I was still optimistic that all was going to be okay. Looking back, the signs were probably there and maybe even obvious to some that there was something else wrong. He was on the smaller end of the growth charts, but we had a lot of smaller genes on my side. He breathed rapidly, but he was always so happy so I thought he was just excited. As a first time parent, I really didn’t know what was normal and what wasn’t. He was happy, so I was happy.
In March 2015, a trip to Children’s Hospital Pittsburgh of UPMC changed everything. My son was very sick with the flu. Chest x-rays concerned doctors because the right side of his heart looked to be larger than what they would expect of a child his age with his diagnosed defect. A whirlwind of echocardiograms, electrocardiograms and blood tests followed and the “normal” defect we were told of day one was actually a less common heart defect called inferior sinus venosus ASD coupled with a partial anomalous pulmonary venous return defect that could only be corrected by performing open heart surgery. My husband and I were devastated. How was this missed? How could his doctor not have known? How could we not have known? What damage had been done? We decided in that moment to change doctors and to begin seeing the team from the Heart Institute at Children’s Hospital Pittsburgh of UPMC.
The doctors at Children’s were very comforting and explained what was really wrong with my son in ways we could understand. My husband and I never felt rushed and had a full understanding before all the next steps. That same year, in May, he underwent his first heart catheterization. He had recovered from the flu and the catheterization was needed to take photos of his defects and obtain measurements for the surgeons. After three long hours, the doctor came out to meet with us. The news wasn’t good and you could tell was hard to deliver. My son had developed pulmonary hypertension and we were told it was not an easy disease to treat and there was no cure. She informed us we would need to meet with the doctors within the cardiomyopathy division to discuss options, but at this point, surgery was too risky.
My son was admitted into the cardiac intensive care unit (CICU). The care he received there was nothing short of wonderful. No matter who came into his room, they had such compassion for what we were going through. The doctors and nurses were there to care for my son, but they cared for my husband and me too. Within minutes, it seemed there were people coming in, introducing themselves and offering ways to help. We were given cards with phone numbers and informational packets. As the saying goes, it takes an Army…we had one. However, the reality was we needed to make decisions and all we could produce was scared, blank faces. It was hard to process any of it, but we knew in the few minutes it took for the doctor to explain this disease our lives had changed. How did we get here? How was this possible? He was our happy and full of energy little boy 12 hours prior. Again, the patience, reassurance, and support was phenomenal. Every person who walked in our room gave us some form of reassurance it was going to be ok and we were doing the right thing.
We made the decision to be aggressive and proceed in the treatment of his pulmonary hypertension with medication administered through a PICC line. We learned our days would be filled with monitoring, blood work, doctor visits, a list of medications and the potential for random alarms going off at all hours. There would be emergency situations and lots of training from home nurses.
The heartache that came next when thinking of his future was at times unbearable. I have never felt so helpless in my life. I was his mother. It was my job to protect him and keep him safe and healthy, but I could do nothing to stop or help this. Had I failed him? How was he going to play with a tiny backpack containing a heavy pump and a cord attached to him at all times? Will he be an adjusted and happy toddler not being able to attend daycare and be with his friends? Will he be looked at as different?
Can we handle this?
One year later, he has recovered from his corrective open heart surgery and has had two more cardiac catheterizations. I have one amazing kid. Through it all, he has remained the happiest kid most people have ever met. He became my force of strength, determination, and inspiration in the darkest moments. No matter what life throws at him, he weathers the storm and continues on with a smile on his face. He has defied all odds against him and has surpassed everyone’s expectations. You will see this look of determination on all of the kids’ faces throughout Children’s Hospital. A young girl taking her first walk since her heart transplant to the young boy shooting basketball while on oxygen and dragging along an IV pole in the Atrium.
Raising a child with a chronic medical condition is not an easy task. It can strain a marriage, your personal life, and will definitely change you forever. There are still days I wish I could curl up in a corner and cry. Days I wish I could take all that he has been through and had it all happen to me instead. And still there are even darker days I wonder if something could have prevented all this. The people of Children’s Hospital have made this journey one of hope. From the security guard at the elevators who gives you a smile and good morning when you come down for coffee, to all of the health care providers in the Heart Institute, there are signs of support. The nurses in both the CICU and on 7A have made things as comfortable as possible for us during our stays and the Child Life employees and volunteers are true champions. My family will be forever grateful to everyone we have met along this journey; you are all truly special people.