I am raising money for Children's Miracle Network Hospitals. These are the Children's Hospitals around the country that help kids with all sorts of illnesses and medical conditions, ranging from cancer to cardiac conditions to neurological issues to broken bones and everything in between. This cause is so very important to me because I am a mom of two boys who are both patients at Children's hospital in Washington DC. My sons both have a cardiac condition called Long QT Syndrome. This condition can be very dangerous as so many conditions can be.
My oldest son was diagnosed at 7 weeks old and was immediately put on a medication (a beta blocker) for it. When he was 3 he had his first episode, it was terrifying. Think of an energetic 3 year old talking a mile a minute and then freezing up and falling. I describe it at the time as "my son turned into a little garden Nome and just fell over". He was transferred from our local hospital back to Children's (we are very fortunate they are local to us too). Our team of doctors and nurses came in checked him out and ran tests. They then told us that we had two options. Option 1 - Defibrillator, Option 2- a procedure (surgery) called a ganglionectomy. Well my sons father and grandmother both have defibrillators so I knew all about those so I was ok with that option, Ganglionectomy sounded scary they would cut nerves from his spinal column to his heart in hopes of slowing his heart rate down because there wouldn't be as many signals going to his heart. If they took to much of this nerve bundle he would look like he had had a stroke and his left side of his face would droop. If they took the right amount it would work and the side affect would be he wouldn't sweat on one side of his body but that his heart rate would go down and his QT wave would shrink in size. We thought we would have time to think they came back later that afternoon and asked what we had decided I told them I thought we could go home and think about it. Our Dr looked at me with sad eyes and said Wendy he has to have one of these before we can send him home you can have 24 hours to decide. I shattered. We ended up deciding for the ganglionectomy. I was terrified. We spoke to the surgeon who we have come to absolutely love and adore and has become part of our family (you kinda have to be at this point when you've preformed 7 of the 10 surgeries my boys have undergone). I will never forget his words "mom I know the risks this may be a first here at children's but I've done this surgery before. I know that just because there is a 1% chance that he will have some of these side affects doesnt change that fact that if he does that 1% just became 100% of your world" He got it he really understood this moms fears. My oldest had the surgery and it WORKED!!! It shortened his QT wave and we have taught him over the years that him only sweating on one side is a super power he has.
When his brother was born he was born at 29 weeks emergency c-section. They had flown us to Wisconsin multiple times when they found out I was pregnant and asked if we would be in a study for new equipment for diagnosing Long QT before birth. Of course we said yes how could we not want to help others know more about this condition! They were almost 100% sure our youngest would have long qt syndrome, especially when they couldn't tell where one heartbeat ended and the next began. We saw many many Drs throughout my pregnancy. When our youngest was born we had two ORs ready one for me and the c-section and one for my baby, he was taken straight to the other OR and then transported to Children's. I didn't see him till he was 3 days old. He spent months at Children's and it really and truly became our second home. The nurses and Drs all love our boys. Our youngest has now had 6 surgeries at Children's. He also had the ganglionectomy preformed for him it didn't work. At 2 years old our youngest received his first pacemaker defibrillator. He has had a very hard fight but he is a fighter. I could write another 10,000 words on everything Children's hospital has done for our youngest alone. I think you get the idea of just how amazing this group of hospitals truly are!