Kari Kinser Written Report- Medical CHD 11/24/2013

Ryans Story

Ryan is 4 years old and attends the preschool that I work at. I had many discussions with Ryans mother about Ryans condition and was able to observe him in his classroom for a few days. Ryan was diagnosed with reactive airway disorder and congenital heart defects. He

Ryan was born 5 weeks premature and was sent to Aurora West Allis NICU, he was on a ventilator the first 2 days of life because he was having a hard time breathing on his own. Eventually his lungs got stronger and he was weaned down to a C-PAP and then to regular oxygen, and finally room air. When Ryan was first born they knew he had a heart murmur which wasnt priority at the time as a lot of babies are born with heart mu rmurs and never have a problem because the hole eventually closes. Ryan did have an echo when he was in the NICU however it wasnt very conclusive because he was screaming the entire time. His parents were told to make sure he followed up with his pediatrician when he was discharged to make sure the murmur went away. At his one month well check his pediatrician said she no longer heard the heart murmur and they thought we were in the clear however, at his two month well check she said that his heart murmur came back. We took Ryan to a pediatric cardiologist at Aurora Advanced in Milwaukee and that is where Ryan was diagnosed with Congenital Heart Disease. Ryans heart murmur never went away per say, the hole got bigger, making it less audible to hear and making them think the hole had closed, instead it just became larger from all the pressure in his left ventricle. In the meantime, the reason why we heard the murmur again was Ryan had now

developed 2 additional holes in his left ventricle. Ryan was diagnosed with a total of 3 VSD, (ventricular septal defects =hole in the heart), moderate aortic valve stenosis (narrowing), and a bicuspid aortic valve (normal heart valve has 3 leaflets, Ryans has 2). This was all very serious and Ryan needed to be seen as soon as possible by a cardiologist at Childrens hospital. Had they not knew what was going on and not heard the heart murmur return Ryan could have had a heart attack and died and they would have never known it. As serious as Ryans condition is, Ryan never had any symptoms to go by. With his mom being a nurse, that worried her because she couldnt even look for obvious, or even less obvious warning signs. Ryan was then seen by his current cardiologist when he was 3 months old and 3 weeks later had his first cardiac procedure. Ryan had a cardiac catheterization with balloon valvoplasty. What that means is they went in with a catheter into his aortic valve where it was narrowed, and used a balloon to open that area up, they also at the same time, tore the valve to try to make 3 leaflets as a normal heart would. The procedure was a success; Ryan spent 2 nights in the cardiac ICU and then was sent home. Ryan was put on medications to take twice a day to help keep his heart functioning properly as well as he has been seen by his cardiologist every 4-6 months. Ryan also has an echocardiogram (ultrasound of the heart) before every visit to see how his aortic valve is doing. Ryan is now 4 years old and has been stable this entire time. Ryan currently has mild to moderate aortic valve leaking, which was to be expected with the bicuspid valve that they tore; he also had mild-moderate aortic valve stenosis. Ryan is on the smaller side, his heart burns all his calories with the extra work load it has, so Ryan has gained weight very slowly. At 4 years old he is only 30 pounds, his parents have worked with a dietician and have added as

many extra calories as they can to his diet. They have had to be very careful with Ryan any time he has gotten sick, mainly with fevers, making sure to get him checked out to see what the cause is whether it is viral or infection. Ryan plays like any other 4 year old little boy. He runs around and chases after his older sisters and classmates. He does however, get tired faster, and can have a hard time catching up with them at times, especially if it is hot outside. Ryan can otherwise live a relatively normal life. Ryan will never be able to play competitive contact sports when he gets older though as his heart will not allow him to have that kind of work load. As I stated before Ryan did not have any symptoms, however some typical symptoms of his diagnosis can include, cyanosis (blue around his mouth and lips), shortness of breath, fatigue, decrease appetite, poor growth, and slow weight gain. Ryan has had some of these things, but not all patients progress the same way. Ryans congenital heart disorder is kind of rare as he had 3 combined things going on all at once as normally they do not. Ryans prognosis is good; however they have to make sure to keep close follow up with his cardiologist every 4-6 months with echocardiograms. Ryan will eventually need open heart surgery to replace his aortic and pulmonary valves, the procedure is called a ROSS procedure. It is a very high risk invasive procedure but very successful in children with these types of cardiac disorders. His parents have held off this long as Ryan has been stable and once Ryan has his first open heart surgery, he will need surgery every 4-6 years as he outgrows the heart valves. And every time you stop the heart to go on the bypass machine during surgery, there can be a little bit of damage caused, no one ever knows how many times too many when is doing surgery every 4-6 years. Ryan has remained stable so they, under the guidance of his cardiologist, have held off as long

has he remained stable. Ryan has his next appt on Fri 11/15/13 and they will find out then if surgery is going to be sooner rather than later. Unfortunately, Ryans heart condition was not preventable as he was born with this, nor is it curable but it is treatable. The cause of congenital heart defects in some case could be having rubella during pregnancy, diabetes, certain medications, drinking alcohol during pregnancy, or it could just be hereditary. The age that normal congenital heart disorders are noticed is at birth or at a young age. Congenital heart disorders do not get better just on their own. Some do not need invasive treatment however they all need close monitoring as they can change at any time. I did not find if they are more prevalent in boys or girls, it can happen in both. At this time the family treats Ryan as they would their other children, always being careful not to expose him to illnesses that are preventable, and if he is sick they get him evaluated right away. The biggest things to watch for are sudden fatigue, profuse sweating, and blue around his mouth or having trouble breathing and if this happens they are to call 911 and get him to Childrens as fast as they are able to. Ryan can be in a normal classroom setting and learn with children his age; he does not need any classroom/curriculum modifications. He needs to limit his physical activities but he is very good at doing that on his own and if he feels off, he will tell an adult. Ryan was also diagnosed with reactive airway disorder, which is very similar to asthma, although a diagnosis for asthma cannot occur before the age of 6 years. Reactive airway disease is a general term and used to describe a history of coughing, wheezing or shortness of breath triggered by an infection. Ryan has not had any symptoms for a long time and according to his mother this is no longer a concern. During our interview, she mainly discussed congenital heart

defects and rarely mentioned reactive airway disorder. Most of the information that I did find lumped this disorder with asthma, giving the same symptoms and statistics.

Works Cited: http://www.mayoclinic.com/health/congenital-heart-defects/DS01117/DSECTION=risk-factors http://www.chw.org/display/PPF/DocID/23403/router.asp Interview with Roxanne