Heart Hero of the Month August 2023
Story by, ❤️Mom Christina
Heart Hero Emmett is 8 years old and was born on November 22, 2014. His hometown is Madison, Indiana.
Emmett was born at Kings Daughters Hospital; they never diagnosed him even after he never ate the whole time he was there; they just kept saying it was normal for a newborn not to eat. His breathing was also very fast and even my sister-in-law said it didn’t look normal, but the doctor once again said it was normal. After getting released and going home the first night we took him to the ER around 7 pm to have him checked out because he still wouldn’t eat and was kind of looking yellow to me but ER sent us home. Around 3 am I went to take a nap and my husband was looking after him. I kept hearing him cry so I got up. My husband had him swaddled in a blanket that had a little texture on the inside and when I unswaddled him I noticed a red and blotchy look. I first thought maybe it was the blanket but then I thought no way, I told my husband to call 911 because something wasn’t right. My husband said maybe he is having an allergic reaction, but he hadn’t eaten anything to have one. The ambulance came and they acted as if it wasn’t a big deal. My husband rode with him because I needed to pack some stuff and put the dogs out. I figured I would show up and they would be giving medicine and he would be fine. That was not the case at all, the same ER doctor was there and called for statflight, he said that the baby didn’t look the same just hours before. When I walked in there were so many people around him and my husband was on the ground crying. It was the worst day of my life. We kept asking what was happening and couldn’t receive any answers besides “We don’t know!” Finally, one lady walked up and said he either has a blood infection or heart defect. When we finally made it to Louisville, they had already started medicine to open his pda back to get blood flow to his body. His temperature when he got there was 92.4 degrees, and his heart was really enlarged. Louisville had never treated his type of heart defects, so they were sending him to Riley Children’s Hospital. I will forever be grateful for this hospital. They made us feel at home as much as possible.
Emmett’s heart defects are L-TGA, which is where the great vessels are switched along with the ventricles, interrupted aortic arch, VSD, double outlet right ventricle, and pulmonary hypertension. Emmett has had the following procedures arch repair, PA band, and PDA ligation which was done with closed heart surgery on Dec. 16, 2014. He had two heart caths in 2015 to balloon his arch. He had a g-tube placed on Aug 05, 2015, before that he had the ng tube since being at Riley’s. We had another cardiac cath on March 23, 2016, to prepare him for his open heart. On April 26, 2016, he had his 10-hour Double Switch Procedure where they switched his vessels and atriums. His last surgery was on Nov. 3, 2020, and it was an open heart due to narrowing from the last surgery.
Emmett was my first born so him being born with these defects not only changed my life but made me look at life totally differently. I had to quit my full-time job, learn how to change a ng tube, and put it back in was the hardest thing looking at your child crying and having to hold them down to get it in. I think the hardest part was not being able to have family and friends over to help and even to just have them there for support due to flu season and if he was to get sick it could be bad for him and even kill him.
As a mom, we worry about our children regardless but as a heart mom, it is like 100 times worse.
When Emmett was younger, I always wished my kid would be normal but as he has gotten older, I wouldn’t change a thing about him, he is so strong and wants to be a heart doctor when he grows up. The worst part is when Emmett had his last surgery in 2020 of course he was older, so he was scared and very emotional about this surgery and it’s the hardest to watch your child be scared for their life.
Emmett loves 4-wheeler riding and even plays baseball, but he wears his protection and just acts like he is no different. Emmett is in stage 1 heart block due to his defects and is facing a pacemaker but hopefully, we never have to get it. Emmett’s biggest challenge was eating by mouth. He never would or could eat due to breathing too fast due to his pulmonary, but when the hospital did a swallow study, they discovered he was silently aspirating. After having the ng tube for 3 months with nothing by mouth they tried repeating the study and he still couldn’t. When he was 6 months old, we did the g-tube and finally, in March of 2022, he got his g -tube removed. I believe the school had a big factor in helping him learn to eat by mouth.
Emmett was granted a wish in 2022 to swim with dolphins and drive an airboat.
Emmett also sent a video to the Youth Heart Ambassador for the American Heart Association and was selected to represent his community for the 2023-2024 year.
Emmett has a younger brother named Wyatt. When we found out I was pregnant I was worried Wyatt would have defects too, due to Emmett being diagnosed with a duplication of chromosome 22q11.23. We had Wyatt checked and no defects, but he does have the same duplication. Emmett’s dad was tested, and he also has it but has no heart defects. Emmett is facing more surgeries the more the grows there will be a narrowing issue. Also, his aortic arch is narrow so they will have to keep watch on that.
When we found out about Heart Heroes -Emmett thought it was so cool to see other kids like himself. We ordered him a cape with the letter E on it in his favorite colors. He even did a photo shoot in it. I love that you can see and read all about other heart heroes and everything they have been through but rocking it like it was nothing. I was so surprised when I received the email saying Emmett was going to be the heart hero of the month. It is awesome that they do this for kids to help them feel special just for a second and help them with everything they have been through.
