I want to give you my perspective on having a heart child. Now this will differ from other heart kids because my kid’s heart condition is unique.
My kids look healthy, they look like normal children, play like normal children, and there is no outside hint that, inside their tiny little chest, their heart is not beating like a normal child.
Now, take how much you worry about your child. Even the simplest of worries, will they get picked on, will they eat enough, did they brush their teeth, did they have a good day at school, are they going to look both ways before they cross a street? These are normal worries about your child and rightfully so. As parents we naturally worry about our children.
See, I have all those same worries, but what can, and at times consumes me, is whether my child will make it through the day without dyeing. Maybe you think that is dramatic, but the fact of the matter is it is true. EVERY DAY I send my children to school I have to fight the fear that I may get a horrible phone call today. Every day I ask myself, is today going to be the day one of my children collapses and dies? If you think I am being dramatic, I am not. It is a very deep rooted fear I fight every day. I can tell you, one little phone number from my children’s school shows on the caller ID, my knees weaken, my heart instantly speeds up, and it is all I can do to breath. I live with fear every day because losing one of my children is something I just can’t bare. Yet it is something I must come to terms with.
While you all may sit there and say I am crazy, or that it is not going to happen, let me remind you that it has happened. My son has suffered sudden cardiac arrest. I have always put it lightly, he had a deadly arrhythmia, but the truth of the matter, my son died, and with the work of good technology (that is the only way the doctors can explain it) his pace maker saved him.
I don’t want pity, I just want you to realize that there are a few moms and dads out there with my same reality. It is a horrible reality we face every day. While I try not to live in fear because it can and will consume you, there is an internal battle we face and demons we fight daily, and at times, that alone is exhausting.
My teenage years were full of sports and exercise. There was not a day that went by I didn’t have some sort of game or practice. My days consisted school, track, soccer, a jog, and finished up with some strength training. Never would you have guessed my heart was broken.
I was older, married and about to have my second child, Cache. I was off to my usual 32 week check-up at my obstetrician office. That was the day our lives changed forever. It was that exciting moment when you get to hear that slushing heart beat and know that the big bump in your belly is this living being in your body. That slushing sound turned out to be my nightmare. My doctor explained to me that the baby’s heart rate was far too low and that my son had something wrong with him.
This is something you never expect to hear when you are having a baby. Babies don’t come out sick? At least that was my naive way of thinking. My doctor told me to walk over to labor and delivery and he would meet me there as soon as he was finished with patients he had in his office.
When I got to Labor and Delivery, they strapped me up to all these machines, and I had instant panic around me. Nurses were rushing around and almost screaming. All I could do was sit there and wonder what was going on. Next thing you know I was being prepped for an emergency C-section. That was until my doctor walked in the door and told them all to calm down. It was a sigh of relief. My doctor performed an ultra sound along with what felt like another 30 doctors. They all agreed with one thing, my baby was fine for now and needed to stay right where he was. He stated that there was something defiantly wrong with his heart, but until he was born they would not know what.
After 36 weeks and lots of daily monitoring and doctor visits, I was induced and my beautiful little boy Cache came into the world fighting like a champ. The next few hours were about to change our lives forever. Cache was diagnosed with Long QT syndrome a few hours after birth and was immediately transferred to Sunrise Children’s Hospital. I was discharged and headed there to figure out just exactly what was to happen next.
There we were greeted by the pediatric cardiologist who had done an ultrasound on Cache’s heart in utero. He began to explain the details of Long QT syndrome and how they treat it. He then told us they could not treat Cache because his heart rate was already dangerously low. To fix this, our son was to have open heart surgery and have a pacemaker placed. A pacemaker, isn’t that for old people? We were numb and just in a really bad dream.
Three days after our perfect son’s birth he was placed with a pacemaker in his little tiny tummy. I remember that day clearly and as I held him waiting for the surgeons, Landslide by Fleetwood Mac was playing on the radio. It was a Saturday morning and we meet the surgical team. They answered all are questions and we walked my infant son down a long hall. We gave him a kiss and we said good-by. The hospital waiting room was a ghost town. We waited, and waited, and waited, and then did a little more waiting. I clearly remember seeing the whole surgical team walk into the deserted waiting room. My heart sank and I think my knees nearly hit the floor. Why were all of them coming in? Why did they all need to talk to us? As we approached them the head surgeon said “Everything went great.” The best words we had heard our whole lives. I am not the “reach out and give a hug to a stranger” kind of girl but I did just that.
The next few weeks, after Cache’s pacemaker placement, had its up and downs. His heart rejected the pacemaker and fluid began to build around his heart. They eventually had to go in and put a drain in to his heart to relieve the fluid. We had trouble with feeding and jaundice. It was three weeks to the day that my son was able to come home and have his two older brothers hold him for the first time.
Life with Cache has proven to be a challenging one. Cache never passed a newborn hearing screen and while most parents would be freaking out about this, we had much bigger fish to fry. We were told at the time of his birth that Cache could have a very rare form of Lonq QT Syndrome called Jervell and Lange-Nielsen syndrome. This rare form of Long QT Syndrome causes sever to profound hearing loss. At about the age of three, this was confirmed through genetic testing but Cache also carries another genetic strain as well, Long QT Syndrome type 1. No one, as of then, had ever carried these two genes on the national registry. He had a double dose. It was also confirmed that I too had Long QT Syndrome type 1 and so did my other two biological children.
Through the years Cache has had many obstacles he overcame. At the age of 2 ½ he had a deadly arrhythmia and was lucky to be alive. After that arrhythmia, it was then decided Cache needed his pacemaker replaced with an Implantable Cardiac Defibrillator (ICD) and have a left cardiac sympathetic denervation. It was a little over a year after the ICD placement in his stomach that it became infected. The ICD was removed and he was placed in the Pediatric Intensive Care Unit for a week until it was decided that he was big enough to have an ICD implanted in his chest. A few weeks later he had to go back in and have pieces removed that had been left in him on accident.
Cache is a thriving child and plays like any other child. We have been very blessed and we all consider him our life saver. He not only saved his Mom, brother, and sister, but his Uncle and three cousins. I am the luckiest Mom in the world to be Cache’s Mom. He has given me far more then I could ever give him. Cache inspires people with his amazing smile, big blue eyes, and love of life.
Cache has taught us and everyone surrounded by him that life is far too short and life is more than just the daily grind. It is about living life to the fullest and making sure those who you love, know you love them. It is about today, and living in today, not about what can happen in the future. We have today and that is all we need to get to tomorrow.