\u201cHe\u2019s overcome a lot,\u201d said Jenna, who lives in Mahomet, Illinois, with Elliott and her husband, Grayson.<\/p>\n
Detecting a problem<\/h2>\n
![\"Baby](\"https:\/\/osf-blog.live.imagescape.com\/blog\/wp-content\/uploads\/2019\/02\/choi-congheart2-sd1-180x300.jpg\")
Jenna works in ultrasound services at a hospital near her home. When she was 16 weeks pregnant with Elliott, an ultrasound technician in her office practiced on her to find routine fetal heart images. At one point, the tech left the room and brought in the head technician.<\/p>\n
\u201cThey didn\u2019t tell me anything,\u201d Jenna said. But Jenna would soon learn the technicians saw an issue with the baby\u2019s heart.<\/p>\n
When she was 20 weeks pregnant, an ultrasound revealed the baby possibly had a heart defect. A follow-up fetal echocardiography<\/a> (echo), which looks at the structure and function of the unborn child\u2019s heart, was performed.<\/p>\n \u201cThat\u2019s when they found it was a coronary artery fistula,\u201d Jenna said.<\/p>\n Dr. Mark Plunkett<\/a>, chief of pediatric cardiac surgery at the Congenital Heart Center<\/a> at OSF Children\u2019s Hospital, said a coronary artery fistula is a very rare defect that accounts for approximately 0.2 to 0.4 percent of all congenital heart defects.<\/p>\n \u201cThe defect is when the coronary artery incorrectly connects to a heart chamber or different blood vessel causing abnormal flow to that structure and results in stealing blood from the downstream coronary artery. This can cause the heart muscle to be deprived of normal blood flow and oxygen.\u201d<\/p>\n Jenna began seeing Dr. Jitendra Shah<\/a>, a cardiologist with the Congenital Heart Center who held hours at a clinic near her home.<\/p>\n \u201cDr. Shah told us the baby probably would need a cardiac catheter procedure to plug the fistula,\u201d Jenna said. \u201cOnce, he mentioned the need for open heart surgery, but said that likely wasn\u2019t going to be the case.\u201d<\/p>\n For the remainder of the pregnancy, Jenna had follow-up echos at weeks 26, 29, 32 and 36 through the Congenital Heart Center\u2019s Fetal Heart Program<\/a>.<\/p>\n During the pregnancy, Jenna reached out to her cousin, whose daughter was born with hypoplastic left heart syndrome and had surgery at OSF Children\u2019s Hospital.<\/p>\n \u201cIt was great to be able to talk to someone who had been through something similar,\u201d she said.<\/p>\n At 39 weeks, Jenna gave birth to Elliott on July 25, 2017. And while she was induced, the delivery was normal.<\/p>\n \u201cThey induced so the congenital heart team was available because Elliott\u2019s condition was so rare,\u201d Jenna said.<\/p>\n Dr. Plunkett credits the advancements in fetal echo monitoring with identifying Elliott\u2019s condition early.<\/p>\n \u201cThis was picked up at 23 weeks into the pregnancy \u2013 that\u2019s very early and it really points out how far we\u2019ve come in prenatal diagnostics,\u201d he said. \u201cBack even 15 years ago, detecting this in the fetal stage was unheard of.<\/p>\n \u201cToday, we have a fetal cardiology clinic almost weekly to detect heart defects earlier and earlier in pregnancy. This is great because by the time the baby is born, we know what problems we\u2019re facing and we\u2019re ready,\u201d Dr. Plunkett said. \u201cWith Elliott, the only question was how soon he would need some type of intervention.\u201d<\/p>\n The plan, Jenna said, \u201cwas to go in with a cardiac catheter<\/a> to put a plug in the fistula, but they wanted to wait until he was a little older.\u201d<\/p>\n So, after two days in the neonatal intensive care unit (NICU), the family prepared to possibly go home.<\/p>\n \u201cI was waiting to be discharged since I was still an inpatient following the delivery and I got called that Elliott had taken a turn for the worse,\u201d Jenna said. \u201cDr. Plunkett came to my room and told me they were taking Elliott for emergency open heart surgery. I had five minutes to go see him and hold him and then they took him to surgery right away.\u201d<\/p>\n During the surgery, Elliott was put on cardiopulmonary bypass and Dr. Plunkett was able to close the fistula. Although he\u2019s repaired coronary fistulas in the past, he said it was the first time he operated on a newborn with this condition.<\/p>\n \u201cThe surgery only took two hours and Dr. Plunkett came out and told us everything went well,\u201d Jenna said. \u201cIt was such a relief.\u201d<\/p>\n For four days following the surgery, Elliott\u2019s chest was left open to accommodate swelling. On day four, Dr. Plunkett closed up the chest and put another stitch in the fistula on the outside of the heart to close it up a little bit more, Jenna said.<\/p>\n On day five, the doctors told Jenna and Grayson the emergency surgery was needed because Elliott had suffered something akin to a heart attack and lost all function in the right ventricle.<\/p>\n Dr. Plunkett said a heart attack is caused when someone has a blockage in a coronary artery preventing blood flow. In Elliott\u2019s case, there wasn\u2019t a blockage but a hole siphoning the blood from flowing downstream.<\/p>\n \u201cThe heart muscle was dying,\u201d Dr. Plunkett said. \u201cHe got into trouble pretty quickly.\u201d<\/p>\n Jenna and Grayson were spared those details on the day of the surgery.<\/p>\n \u201cIf I had known that,\u201d Jenna said, \u201cI don\u2019t know if I would have taken the time to hold him knowing that he was suffering \u2013 I would have wanted them to take him right to surgery.\u201d<\/p>\n On day eight in the pediatric intensive care unit (PICU) following surgery, Grayson was holding Elliott when his heart rate skyrocketed to 268 beats per minute.<\/p>\n \u201cThey told us he was experiencing supraventricular tachycardia<\/a>. Here we thought he was on the home stretch, and that happened,\u201d Jenna said.<\/p>\n Medication was given to stop and restart his heart, which then caused his heart rate and oxygen saturation level to normalize. Additional medication and time helped Elliott\u2019s body start adjusting to his condition.<\/p>\n After 14 days in the PICU, the family went home.<\/p>\n \u201cI sat in the backseat with him the whole ride home,\u201d Jenna said. \u201cWe were pretty nervous.\u201d<\/p>\n Following the surgery, Elliott was on daily injections of a blood thinner.<\/p>\n \u201cI had to give it to him two to three times a day. Here I was causing him more pain \u2013 it was anguishing,\u201d Jenna said. \u201cThose injections stopped after six months. With those daily injections and lab work every week for six months, he had hundreds of needles poked at him. His little thighs were so bruised.\u201d<\/p>\n Today, Elliott goes for a checkup every six months with cardiologist Dr. Ty Hasselman<\/a> and gets an echo<\/a> and an EKG<\/a>.<\/p>\n \u201cHe takes a baby aspirin every day. Other than that, he isn\u2019t restricted from activity or anything,\u201d Jenna said. \u201cHe\u2019s a pretty normal kid. As far as we know he won\u2019t need any future surgeries. Elliott is probably one of the lucky ones. We\u2019re pretty lucky on that end.\u201d<\/p>\n Dr. Plunkett is a bit more emphatic about the outcome and Elliott\u2019s future.<\/p>\n \u201cHe\u2019s fixed. We intervened quickly and were able to close the fistula and recover his heart muscle. His heart function is now normal. He has a mended heart and he probably won\u2019t have any issues in the future,\u201d he said. \u201cThere are some heart defects we can fix and the patient has a normal life expectancy. I like to call this an 80-year win. It\u2019s very gratifying when you have a situation like this. He should have a normal, active and healthy life.<\/p>\n Jenna can\u2019t say enough about the compassionate care Elliott received at the Congenital Heart Center, and the care everyone provided her and Grayson.<\/p>\n \u201cGosh, the whole experience \u2013 we had amazing care. All the nurses were great. They were so great explaining everything to us \u2013 very patient with us about answering our questions,\u201d she said. \u201cI can\u2019t thank the doctors \u2013 Dr. Plunkett \u2013 enough. We had a tremendous outcome and have a happy toddler running around today.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" Jenna Hall says her 17-month-old son is one of the lucky ones. Born with a coronary artery fistula, a very rare congenital heart defect, Jenna\u2019s son, Elliott, underwent open heart surgery at OSF HealthCare Children\u2019s Hospital of Illinois when he was just 2 days old. \u201cHe\u2019s overcome a lot,\u201d said Jenna, who lives in Mahomet, […]<\/p>\n","protected":false},"author":33,"featured_media":5804,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_lmt_disableupdate":"","_lmt_disable":"","footnotes":""},"categories":[118,105,223],"tags":[700,649,142,915],"coauthors":[688],"class_list":["post-5882","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-birthing-center","category-cardiovascular","category-patient-story","tag-congenital-heart","tag-neonatal-intensive-care-unit","tag-childrens-hospital-of-illinois","tag-pediatric-icu"],"yoast_head":"\nPreparing for the birth<\/h2>\n
To wait or not?<\/h2>\n
Emergency surgery<\/h2>\n
![\"OSF](\"https:\/\/osf-blog.live.imagescape.com\/blog\/wp-content\/uploads\/2019\/02\/choi-congheart-sd-3-300x300.jpg\")
Jenna and Grayson were told the surgery would take six to eight hours because it wasn\u2019t clear what Dr.\u00a0 Plunkett would need to do or if Elliott would be put on cardiopulmonary bypass<\/a>, which is when a machine temporarily takes over the function of the heart and lungs during surgery.<\/p>\nAfter surgery<\/h2>\n
Recovery and going home<\/h2>\n
At home<\/h2>\n
![\"Baby](\"https:\/\/osf-blog.live.imagescape.com\/blog\/wp-content\/uploads\/2019\/02\/choi-congheart2-sd2-225x300.jpg\")
<\/p>\nDoing well<\/h2>\n
Compassionate care<\/h2>\n