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The Motlows
SADS Foundation:Sudden Arrhythmia Death Syndromes Foundation
Fund in Memory of
The Motlows
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Our son, Dalton was diagnosed with LQTS (Type 1) in 2007 (he was 11 years old). My son was a normal 11 year old boy. He wasn’t into playing sports like football, basketball, etc., but he loved swimming and was a black belt in Karate.
Back in June of 2005, my son went to my sister-in-law’s house to go swimming with his cousin, Madison, who was 5 years old at the time. Dalton was coughing a lot because of his allergies. I was not wild about the idea of him swimming, but decided to let him go anyway. Dalton and his cousin got in the pool and his cousin got on a raft. Dalton was in water up to his chin and was coughing from his allergies. My sister-in-law got out of the pool to go get a second raft for him. Well between the coughing from the allergies, the water up to his chin and his cousin splashing, he started having trouble. Then his cousin dropped her goggles and asked Dalton to go get them for her and my sister-in-law was telling him to get to the side of the pool. My sister-in-law noticed that it had gotten very quiet and asked Madison where was Dalton and Madison responded “he is sleeping on the bottom of the pool”. My sister-in-law jumped back into the pool, grabbed him, got him out of the water and started CPR. When she got Dalton’s heart started again, she called 911 and then called us. It took me and Phil about 15 minutes to get to her house. We got there a minute or so after the paramedics and Dalton was sitting up, looking sort of dazed. I rode with him in the ambulance to the hospital. After the ER doctors checked him out, they classified this as a “near drowning” and let him go home.
Fast forward 2 years to June of 2007. By this time Dalton has become a 2nd degree black belt and an excellent swimmer (we had gotten our own pool). My husband and I had just finished cutting the grass and I was cleaning up and Phil and Dalton were in the pool. All of a sudden I heard Phil calling Dalton’s name. After the second time I heard him calling Dalton’s name, I turned around and saw Phil on the stairs of the pool with Dalton slumped over his shoulder. Phil was having trouble getting Dalton out of the pool and kept on saying “I can’t get him up enough to get him out” and I kept on saying “Just give him to me”. I am sure it was only a minute, but it felt like hours before we got him out of the water and laid him down on the ground. He was not moving and his eyes were rolled up into the back of his head. (Believe me, I will never forget it.) Have you ever heard people say in an emergency, they were able to do something they never thought they could do? Well, I now know what that is like. It was as if someone else took over me and I started doing CPR (without even checking for a heart beat). I had learned CPR in high school many, many years ago. I was doing CPR and telling Phil to call 911. Since it had been many years earlier that I had learned CPR, I was doing 5 compressions and then blowing air into his lungs. The problem was Dalton’s teeth were clenched so tight that I could not get his jaw to open so I could blow air into his lungs. I kept on doing CPR and after what seemed to be a long time I finally heard gurgling coming from Dalton. I turned him on his side and started slapping his back trying to get him to breath. Then I turned him on his back again and started CPR again. I finally heard moaning coming from Dalton and believe me that was the best sound in the world. When he came to, we got Dalton up and got him seated in a chair and waited for the paramedics to arrive. 2007 was 2 years after Katrina had hit (we live right outside of New Orleans) and things still were not right in the medical field. While waiting for the paramedics to arrive, I went into the house to get a shirt and another towel for Dalton. While in the house the 911 operator called and asked if we still needed the paramedics. I said yes and she said there were none available right now, but she would get them to the house as soon as a crew was available. In fact, she had asked me “Is the child out of the water?” What kind of fool would leave their child in the water? I went back outside (with the phone) and the police and firemen showed up. We told them what had happened and they were trying to figure out what hospital could take him quickly. (After Katrina the wait time in the ER could be up to 8 hours.) Then the paramedics showed up and someone realized that the hospital close to our house had a pediatric ER that did not have a long wait time, so again I rode in the ambulance with Dalton to the hospital.
When we got to the ER, we told the doctor what had happened. We also told her about what had happened at my sister-in-law’s house 2 years earlier. All she said was “This doesn’t happen twice.” and walked out of the room. A few minutes later, some technicians came in and started running some tests on Dalton. Our cell phones weren’t working in the room where they had Dalton so Phil and I took turns leaving the room to go outside to call family members to let them know what was going on. One time when I was leaving the room, I saw the ER doctor that was handling Dalton’s case and she was sitting at a desk with his EKG. She was using a little ruler (sort of like the ones people use for sewing) and she told me not to leave. So I went back into the room and she came in a minute later. She told us something didn’t look right and she was admitting him to the hospital. The ER doctor also asked how long did I perform CPR before getting Dalton back. My husband and I weren’t sure. He had to ask one of our neighbors. Phil and Dalton were playing in the pool (underwater). They were shooting each other with some sort of guns and Phil said all of a sudden Dalton started swimming real fast from the middle of the pool to the side and then back to the middle. Then he said he saw Dalton lay down on the bottom of the pool. That was when he grabbed him and got him above the water. My neighbor next door was having a seafood boil in his backyard and he said he heard Phil calling Dalton’s name. He said the more he thought about it, the more he realized that something didn’t seem right. So he came to our backyard and let himself in. When he got there I was already performing CPR. He told us from the time he heard Phil calling Dalton’s name until the time we got Dalton back was about 2 ½ minutes. If you add the time Dalton was underwater playing with Phil and the time it took to get him out of the pool, we figure Dalton was without oxygen for about 3 ½ to 4 minutes. Thank God I have the greatest neighbors.
After getting settled in a hospital room, Phil went home and I slept at the hospital with Dalton. The next morning we found out they were not going to release Dalton because the doctor had ordered several tests. They ran several tests on him that day and the following day a pediatric cardiologist came in and told us Dalton had LQTS. He said he could not treat him, but had contacted an EP to come and see Dalton. Dalton also has ADD and was no longer allowed to take the ADD meds. He also said that he wanted everybody in both families to have an EKG so he could see where Dalton got the LQTS from. The EP he had contacted was not associated with the hospital Dalton was in so it took him 5 days to get to the hospital. This EP was an adult EP with the bedside manner of a skunk. He released Dalton from the hospital (after being there 7 days), put him on Toporol and said he wanted to implant a “recorder” in his chest. We asked for an ICD but he said he would not give him one unless he felt it was necessary. In the meantime, we all went in and had EKGs and it turned out that I also have LQTS (I am asymptomatic). No one else on my side of the family has LQTS and both of my parents are deceased.
A week after Dalton was released from the hospital, he went into a different hospital (the hospital the EP was associated with) and he put a recorder in Dalton’s chest. Dalton had to walk around with this small black box on a black cord around his neck. We were told if Dalton had another event, we had to push the button on the box so it could be recorded. Again we asked for an ICD and were told no. We also had to bring Dalton to see this quack every 3 weeks. (By this time, Dalton is back in school, but not allowed to do PE.) Every time I brought him in, there was a cardiac tech who would tell me (when no one else was around) that Dalton should be seeing a pediatric EP. My husband didn’t want to switch doctors because this guy was supposed to be the best in the State. The last time we saw this guy, he told me that since Dalton had gone 2 ½ months without an event, we were going to have to recreate the situation at our house so he could have an event and we could record it for him. This was the straw that broke the camel’s back. I called the cardiac tech, got the name of the pediatric EP (Dr. Christopher Snyder) and called Dr. Snyder’s office. When I told the nurse what was going on, she got Dalton an appointment with Dr. Snyder 2 days later (usual wait time for an appointment is 2 to 3 weeks). The first thing Dr. Snyder did was change Dalton’s meds to Nadolol. Then he scheduled Dalton for surgery to remove the recorder and put in an ICD. One week later, Dalton got his ICD. He also ordered genetic testing so we could see what type of LQTS he had. He still sees Dr. Snyder once a year and 3 times a year I place a monitor over his ICD which send info back to Dr. Snyder.
I now have an EP and am on Atenolol. I also have had genetic testing and it turns out both of us have Type 1. Sorry this is so long. Even though typing this up brought back lots of emotions, it feels pretty good to finally get it out. As far as activities are concerned, I went back to work in March of 2010 (I had quit my job in May of 2005 to be a stay at home mom). My job is supposed to be 8:00 to 5:00, but it is usually 7:30 to 6:00 or 6:30. By the time I get home I am too tired to do much. Weekends are usually errands, washing clothes, etc. I had surgery on my neck in 2000 and I just found out that I have another herniated disc in my neck so exercise is limited for now. During the week Dalton has so much homework that he usually doesn't finish until 8:00 or 9:00 (he is in 10th grade). On the weekends, he loves watching football, playing video games, fishing or just going places with his friends.
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Family history of unexpected, unexplained sudden death under age 40.
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