My brave son battling his Congenital Heart Defect
With this week being Congenital Heart Defect Awareness week and the 3 year anniversary of my son’s open heart surgery, I decided to write him a letter documenting the events surrounding his Congenital Heart Defect.
To my son Parker,
You battled a more difficult journey in your first seven months than I have faced in all of my 31 years. I decided on the three year anniversary of your open heart surgery that I wanted to reflect back and share your story with you. In the process of reflecting back I realized that your battle taught me so many lessons as a mom. In turn, you and your strength have made me a better person. Here is your amazing personal story that I hope helps you see how special you are and how your strength not only helped heal you, but transformed those around you.
On a hot July day you were born into this world, our third child. You were healthy and passed all your initial newborn checks during those first 5 minutes of assessment. The first day went fast and was uneventful, just a lot of bonding between us. The next morning when the nurse took you back to the nursery for more routine checks, I remember you being gone for quite some time and being a little concerned. The nurse finally came back in to tell us that your pulse oximeter level was low and that she had called the pediatrician to come in and check it. The pulse oximeter tells us how much oxygen saturation is in your blood. Little did we know, until we came to understand congenital heart defects, that this should have been a red flag that something was not right inside of you. By the time the pediatrician came to check you your pulse ox was fine and he said he didn’t see any reason for concern. The rest of the hospital stay after that was fine and after two days we were heading home.
For the next two months you grew and hit milestones, so we didn’t see any reason for concern. At your two month appointment the doctor mentioned that he could hear a heart murmur and that we should schedule you for an echocardiogram, but there didn’t seem to be an urgency from the pediatrician to get this done right away. We also didn’t feel the need to rush because your older brother had also had a heart murmur, something we had heard was common at a very young age and especially in boys, and your brother had ‘outgrown it.’ Unfortunately, assuming you were like your brother was a mistake on our part and one I am sure we will never make again. About four weeks later I decided to take you into the doctor because you had a constant cold and runny nose that we could not get to go away. During that appointment he listened to your heart again and said we needed to have the echo done this week because your murmur was still loud. So, before we even left the doctor’s office they had already called over to the hospital to schedule an echo for you. I remember thinking that this was more serious than we had originally thought and hoping that it was just going to be something you would outgrow too. The echocardiogram was a long process, with you having to be still on a table for about an hour, and at three months old it was not an easy task, but you were relatively good. A very long week later, we finally had the results from our pediatrician and all we were told was that you had Tetralogy of Fallot and we needed to see a pediatric cardiologist. The only thing our pediatrician said besides the diagnosis was that this usually means the child will need open heart surgery. I remember this coming out of his mouth so matter of fact, like it is just a simple procedure. I was in denial and felt like he had to be wrong and maybe I wasn’t understanding what he was saying. You, my little baby, was going to have to possibly have open heart surgery? How could this be if you are gaining weight and reaching milestones? I was so confused and I think I held on to the hope that maybe when we went to see the pediatric cardiologist he would have some other prognosis.
About a week later we did see the pediatric cardiologist and what I heard that day left me in shock. I remember trying to concentrate on what he was saying, but few things processed in my head as he started telling us what to expect in your future. I remember being told that you would need your first open heart surgery around your first birthday and that by your 18th birthday you would need another surgery because the heart valves will usually fail at some point. There would be more surgeries as you got older too. He also mentioned that your physical activity would have to be limited. I remember after these pieces of information, my mind just started wandering to the future. How will I know if your valve is failing? How do I tell you that you are going to have to endure multiple open heart surgeries throughout your life? How will I tell you that you can’t go run and play with your brother and sister too much because your heart won’t be able to handle it? Will I be able to find the strength I need to find as your mom to help you through all this? Was this my fault in some way? Things started getting real at that point and I remember feeling overwhelmed with what I was hearing. It seemed very surreal sitting in that doctor’s office being told your heart needed so many repairs and yet you didn’t physically look or act like there was a problem.
As soon as we left that appointment daddy started calling for appointments with other pediatric cardiologist for a second opinion. I remember questioning daddy as to why we would get a second opinion. The doctor read the echocardiogram and EKG, how could he be wrong? To give such a serious prognosis, wouldn’t he have to be sure and correct? Well, I learned later that for serious health matters and if time allows, a second opinion is a good idea. In our case, it may have been a lifesaving decision.
A month later, we were in a different state and getting a second opinion. We had decided that we were not going to share the first opinion with the new doctor, much to her frustration, until she gave us her unbiased diagnosis. So, they ran another EKG and set you up for another echocardiogram. While the technician was in the process of performing the echo a doctor walked in the room. She explained that she reads the echocardiograms and EKGs after they are done and somehow your EKG had already showed up in her box already. This was very fortunate for us because she said that as she looked at it she was alarmed and needed to seek out the child, you, that had produced such a reading. She told us that it was so bad she could not believe you were still with us! That is a moment I will never forget. You were my miracle baby. Your heart was doing crazy things, yet we were fortunate enough to still have you with us. The EKG ending up in her box earlier than it is usually sent to her became our blessing. The doctor decided to stay and do the echocardiogram herself, so she could get the exact pictures she wanted. This gave us a lot of confidence in her diagnosis. Finally, when she was ready to give us a diagnosis she asked to look at the first doctor’s diagnosis we had been given. We handed her your medical folder and because the room was still dark, I remember her opening the door enough to get light on the paper and as she read what the previous doctor had said, this doctor just shook her head. It was at that point I knew we were now going to be told something different.
You were now diagnosed with a VSD (Ventricular Septal Defect), a hole between two chambers of your heart. The doctor was confident you did not have Tetralogy of Fallot and she was able to explain in great length how that conclusion was made. What did this mean for you? The good news was that this should be just a single surgical repair. An open heart surgery still, but the hope was it would be a one-time fix. A patch would be placed on the hole and sewn in place. The amount of relief I felt at that moment was very unexpected. While you would still need open heart surgery, this diagnosis was better than what we had previously been told. The bad news, most babies are diagnosed much earlier than four months (as you were at the time) and have surgery before they are 3 months old. So your surgery was not going to wait until your first birthday; it now needed to happen as soon as possible. A week later we met your surgeon, asked him many questions and you were scheduled for surgery two weeks later. We headed back home to wait the two weeks before heading back to Chicago for your surgery.
I think those two weeks were a real changing point for me as a mother. I now had a date on the calendar that I was watching and knowing every day was one day closer to a very serious surgery for you. I remember cherishing every moment with you that I could in those weeks. I held you more, kissed you more and loved on you more than I ever had before. I also found tears rolling down my face during those weeks, when I would just look at you. While I hated to think it, I knew there was a possibility you may not survive the surgery. The doctor said it had a high success rate, but your heart does have to be stopped and there was a possibility that it may not restart. The thought was so difficult to even imagine! I also prayed a lot, more than I had ever done before. I prayed for your strength to get through all the challenges you were going to face and strength for me to stay strong for you and your siblings during this time.
The most valuable lesson I learned during the time, between your diagnosis and your surgery, was a lesson I am very grateful to have been given. I learned how to live in the moment. Those weeks were all about the here and now. All about making the most of the time we had together because I had finally truly realized that life can be short. To this day I still carry this lesson in my heart. It is what drives me to create wonderful memories with you and your siblings. It is the reason I write this blog. I want to share the things we do as a family with others, so that maybe they also can make memories with their family or friends. I still strive to make the most of my time with all of my children even now, years after your surgery, because of this lesson I was taught through the hardship of your journey.
A week before your surgery we hit a bump in the road. All of us, except for you came down with the flu. We all wore masks around you and did our best to keep you healthy, knowing that there would be a delay in your surgery if you were to get sick. At this point, any delay in surgery meant more worry and concern for your health. We already had been given warning signs to watch out for in case something were to go very wrong with your heart and when to rush you to the ER. Fortunately, we all recovered and you weren’t showing signs of being sick, so we headed back to Chicago for you pre-op. You had all of test done that you needed for surgery the next day. It was over 5 hours of testing! At the end the nurse brought us into a room to talk to us about what to expect the next day during surgery. As she was talking the phone rang. It was bad news, you had the flu. No symptoms except a runny nose, which you consistently had and we later found out was also a symptom of a CHD. Sure enough all of our attempts to keep you healthy had failed. We were told no surgery the next day and we would need to reschedule.
At this point I felt like a bubble had burst around me. I had built a shield of strength around me to prepare myself for your surgery and now I was going to have to rebuild that in a few weeks. I felt so empty and just emotionally spent. I remember daddy going to get the car for us and I called a friend to tell her we were heading back home, surgery was cancelled and while we talked I was trying so hard to hold back the tears. The night before we had drove three and a half hours to get here and all I wanted to do at that point was drive right back home and get away from the hospital. That night we did just that, we picked up your brother and sister from Grandma and Grandpa’s and drove home to get back into our routine for another week and a half, until you were healthy for surgery.
February 7th we drove back to Illinois. There was no need for a pre-op now, so that night we did our rounds to see family members so they could all love on you before surgery. No one said it, but I know in the back of their minds, they weren’t sure if it was going to be the last time they would see you. That night we made sure you got your hugs and kisses from your brother and sister too. They were too little to know exactly what was going on, but we wanted to make sure they had their moments with you too.
The next morning February 8th, we were up early as surgery was scheduled for 6:30 a.m. and we had an hour drive into the city. I recall sitting in the car on the drive and it being so quiet. I would hear little noises from you in the back and I would try not to cry. I was trying to build up the strength I would need to have when the medical staff shows up to take you away from me and into the operating room.
We got to Children’s Memorial Hospital at 6 a.m. and checked in. We were taken to a room where we sat with you waiting to find out what would happen next. I remember every time someone came into the room I would think, is this the person that is going to take you away. Finally that person came in. I honestly cannot remember if it was a male or female, but I remember you being picked up, still awake, just looking at me as they carried you away. Once you were out of sight, I lost it. I let all of that strength I had held on to for so long just go and I cried. I let it all out and just sobbed, it was out of my hands now. I could no longer hold you and comfort you through this journey. You were on the operating table and all I could do was pray for your comfort, strength and the doctors and nurses that were in there with you.
Once I settled down, they lead us to the waiting room where at 6:30 in the morning, it was quite empty. I tried to read and keep busy, but it was hard. Every time a nurse or doctor came in I had hoped it was to update us. The waiting room started to fill as more parents waited for their children to get out of surgeries, but those that came in after us were leaving well before us. Your surgery was a long one. We got updates periodically, but a lot of the time was spent waiting and wondering how you were doing. Finally around 2 p.m. the doctor came to take us into a private room to talk. Surgery was over and it had gone well! The hole was much bigger than they previously thought, but your heart restarted fine after the patch was placed. It was all great news! I couldn’t wait to see you, but I did not realize how unprepared I was going to be for that moment.
The nurse came to get us about 15 minutes later and took us to your room in the PICU. The nurse had warned us that you would have lots of lines and tubes hooked up to you. Those words are not enough to prepare a mother to see her child in that state. I don’t think anything could have prepared me to see you in a sedated state with all the medical devices coming in and out of you. I had to take a seat within 10 seconds of being in your room for fear I was going to faint. I don’t know if it was the lack of food that day because I was so stressed or the sight of my baby in this big hospital bed with all these machines, but it was just too much! You were sedated which was very strange for me. You looked like my son, but you were lifeless. Machines were pumping air into your lungs to keep you breathing and obviously you were not responding to any touch or anything. You were not one to sit still, so while I could look at you and see it was your body, it didn’t feel like you. I couldn’t wait for you to get out of your sedated state!
Daddy and I just sat in your room for most of that evening. I did not want to leave you at all for fear you would wake up and be all alone in this strange room. Eventually, the nurse and your daddy convinced me that you would not be waking up that night and that I should go back to Ronald McDonald House and get some rest. So, we did, but you can imagine I was up bright and early the next morning to get to the hospital and see you. When I arrived you were still in the same condition. You had done well overnight and the nurse said that maybe we would try and wake you up later that day when they felt your lungs were working better and they could take you off the ventilator. Your lungs were a big concern because you had had extra blood pumping through them for so long, due to the hole in your heart, that it had caused some problems and was a big reason you were often congested. I sat in that room for most of the day, it was my 29th birthday that day, but that didn’t matter. I remember thinking all I wanted for my birthday was for you to wake up from sedation. Around 2 p.m. they finally tried to wake you, but you reacted so poorly to waking up that they had to keep you sedated. It was best for you I am sure, but it meant another day without my baby. I left you for a little while that night to go out for a birthday dinner, again after much persuasion from the nurse and daddy. It was nice to get out, but I couldn’t wait to get back. We hung out in your room until about 11 p.m. and called it a night, but I looking forward to coming back and hopefully getting you to wake up.
The next day you were finally ready to get off the ventilator and wake up. It was the most amazing feeling seeing you open your eyes and look at me. While I was very nervous to hold you because I didn’t want to hurt you, I was so excited when I was finally able to! Each day got better after that and you only had to spend 5 days in the hospital! They were even able to start seeing new skin grow over the patch that was placed, before we left the hospital, so that was a great sign. You went home on the day you turned 7 months old. We had to keep you away from other children for about 2 weeks, including your siblings because you could not afford to get sick. After a good check up with the surgeon and 2 weeks in Chicago, we headed home. We stayed quarantined in the house for a few more weeks. Your brother and sister were home with us too, but we did not take them to preschool for those weeks to prevent other germs from coming in contact with you. This was the home stretch! It took about 6 weeks from surgery before we felt safe venturing out much with you, but you had made it. Things were looking good! You went to see the pediatric cardiologist multiple times for the next 6 months until they were sure that everything was looking great. You now only have to go about every 3 years to check in with the pediatric cardiologist, so we will be following up soon. You are such a strong and loving little boy and I can’t imagine how life would be without you! You may have been too little to remember your heart journey, but it is something I will never forget! It was a tough road, but going through this with you has made me a better person and a better mom. Thank you for your strength and showing me how strong of a person I can be too!
“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.” ― Haruki Murakami
Waiting to be taken back to the operating room
Right after your open heart surgery.
Day 2 post op, still waiting for you to wake up.
I was able to finally hold you!
Two week post op check and time to remove the bandages!