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"No act of kindness, no matter how small, is ever wasted"
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This is Misty and Matt Pittsburgh, PA US Wow, where to begin, it's been quite an adventure for our family since the birth of our son Logan on June 12, 2007. He was born 3 weeks ahead of schedule, 3 days after we moved into our new house, and the very same day we closed on our old house. It was a busy day, that's for sure! Soon after he was born, Logan had some breathing troubles, so the nurses called in the pediatricians....who soon noticed that Logan also had a heart murmur. They decided to take him to the NICU for an echo and chest x-ray. They found that Logan had mild hypertrophic cardiomyopathy, and informed my husband and I that it would probably go away since we do not have a family history of this condition. I also had some trouble with my sugar levels during pregnancy, and hcm can be caused by that, so the doctors weren't too concerned. I, however, felt like something more was going on...just that mom instinct I guess. He also had some jaundice that needed treatment, and a sacral dimple that was found to be fine. So we had a bit of an extended stay at the hospital...but went home soon after. At 3 weeks old, Logan was diagnosed with svt, which is a condition with the heart's electrical make up that causes his heart rate to go extremely high (in the 250's), and get stuck there. We had to rush him to the hospital, where they diagnosed him and told me this was a fairly common heart condition that is easily controlled with medication. At Logan's 1 month check up, the cardiologist went over everthing with Logan's heart, and also informed us that the hcm might not go away, and went over treatments. He also informed us that Logan could someday need a heart transplant if things progressed. These words were so difficult to hear, as anyone can imagine. For now, he told us to go home and enjoy our son, and that time will tell. My husband and I did our best to put this in the back of our mind and to take things day by day. I still couldn't shake that feeling that there was more to the story. But for the next 8 weeks, Logan did great...he grew well, ate well, smiled early, and rolled early. You would never know anything was wrong with him. Things changed rapidly the morning of August 27 though....Logan was acting strange, it seemed like his svt was acting up. He was sweaty, breathing fast, lethargic, everything he had a few weeks earlier when he was diagnosed. Sure enough, when we got to the hospital, he was having an episode. Initially the doctors said it was probably just a medication issue, that it needed adjusting. However, when they did the echo, they found the pressure in the right side of Logan's heart was extremely high. When Logan was first diagnosed, it was the left side of the heart that was enlarged and there was nothing on the right side, so this was surprising. There was also pulmonary valve stenosis, which was news to us. The ICU doctor came and spoke with my husband and I about the options, which was the most difficult conversation we'd ever had. He said we can try surgery, along with beta blockers to reduce the enlargement...or heart transplant. My husband and I were devasted, but wanted to do whatever it took for our sweet little boy. Luckily the doctors decided to try the surgery option, which is what we wanted as well. One doctor mentioned testing Logan for noonan syndrome, but was sure he didn't have it. In fact, most of the other cardiologists thought the test was a waste of time....even the geneticist thought Logan did not have it. He came and did all these measurements, checked Logan from head to toe, and said Logan did not have it. Something in me thought I needed to look into this futher. My occupation is a research scientist, I do cancer research. So by nature I am very inquisitive. I went home and did my research, and as I read more about noonan syndrome, I was sure Logan did have it. He had the 2 heart conditions that are common in NS, hcm and pulmonary valve stenosis. As I read on, I understood why the doctors didn't think Logan had NS, just because he didn't have any of the typical physical characteristics. But the more I looked closely into it, Logan did have one obvious trait. He had these amazingly blue eyes....and both my husbands and my eyes are brown. Not convincing enough to say Logan had NS, but it made me think. I just really had this crazy gut feeling that this is what Logan had. Logan also had some other characteristics of NS, he had a chest that stuck out far and also a high palate. I pointed this out to the doctors, who thought I was pretty much crazy. I knew Logan had this though, and I also thought my husband and his family did. This made the doctors (and my husband.)..think I was even crazier. Especially since my husband is 6ft 4in. tall, and only had a chest that stuck out. But again, if you look closer, he has the course hair and a high palate as well, and everyone in his family has the same traits. He also had a growth spurt at the age of 18, also something that happens with noonans. I reminded the doctors that NS is thought to occur in every 1000-2500 births and is often called a hidden condition. Not only that, but families often go undiagnosed until someone has a heart condition, just like Logan. No one could convince me I was wrong, and Logan was eventually tested for NS. In the time being we went along with the plans for Logan's surgery. It went well, they were able to greatly decrease the pressure in Logan's heart. The surgeon also repaired Logan's pulmonary valve, which had a small annulus, and removed the stenosis. Logan had a bit of a rough recovery, but soon enough we were home. At our next cardio appointment on October 29, 20007 Logan's heart still looked good, there were no changes. Again though, the doctor reminded us that we're not out of the woods, and Logan may still someday need more surgery, or even a transplant. I brought up the noonans test, and he went to check on the results. I'll never forget the look on the doctor's face when he came back in the room. He was one of the doctors that was sure Logan did not have noonans. He told me the test was positive. This was no surprise to me. And it was a great relief to have a diagnosis, we finally had an explanation for everything going on with Logan. And now we also had hope for Logan's heart. We knew that hcm can progress in NS, but it can also remain stable, or even get better. So we finally had something to be optimistic about. Again, only time will tell, but it felt good to have some hope. And I have a wonderful update...we got some great news at our recent cardio apointment. The doctor said Logan looks great, and his heart sounded really good. And even better, the echo revealed that the pressure in Logan's heart is now even lower than it was after surgery....and his heart is functioning really well. My husband and I were so thrilled with the news, finally...some good news!!! Otherwise Logan is thriving, he's meeting all his milestones, and is a very happy baby. The only major issue we are having right now is feeding, he doesn't seem to have much of an appetite since surgery. But we are making progress. And from what I've read about NS, things just seem to take a little time and patience. So we're just going to keep working on it day by day, as we will with anything else that comes our way. Right now I'm going to enjoy my beautiful little boy, as well as my 2 other sons...Nick and Colt, who are from my first marriage. We are all thrilled to have Logan, he has taught us so much already!
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