Team Cirbo Conquering CHD
Thank you for visiting my Congenital Heart Walk personal fundraising page. Please consider making a tax deductible contribution to support my fundraising efforts on behalf of The Children’s Heart Foundation and the Adult Congenital Heart Association. All funds raised benefit CHD research and programs. I appreciate your support!
We will walk to honor the strength, courage and resilience of our Son, Brother, Grandson, Nephew, Cousin and Friend. We walk with Grateful hearts for the first responders, doctors and health care providers that have touched our lives through CHD. They make a difference every day in the life of Heart Warriors and their families.
CHD does not just affect a person physicaly. There is a mental and emotional aspect to this as well. These warriors need support in many ways including emotional and spiritual. Imagine fighting the same fight every day of your life. You go to bed thinking about it and wake up to the reality of it every day. This is why we are walking in the Congenital Heart Walk. To raise money and awareness for all the warriors like Ryan. So they get the support and care they need and deserve.
Ryan's Story :
Ryan is our Heart Warrior. He was born in 1991 with a Coarctation of his Aorta and Aortic Stenosis. We were told that Ryan needed to have heart surgery to repair the Aortic Coarctation or he would die in three days. This was a very scary time. He was born 7 lbs and 11 oz and 21 inches long. He looked perfect. It was not until the next morning that we found out after his newborn exam that our baby boy was born with a congenital heart defect. It took a lot to wrap our minds around that and decisions had to be made quickly to save Ryan. That day he was transferred to Children's Hospital and had several tests as they prepared for his surgery the following morning. Ryan's surgery went well and he spent 12 days in the NICU healing. When we were finally able to bring our boy home he was on oxygen for a couple of weeks so that his heart did not have so work hard while it was healing. It was determined then that Ryan was not gaining enough weight and we had to add supplements to the breast milk and feed him by bottle because he was working to hard to nurse. Ryan developed a staph infection from a stitch that did not dissolve. The surgeon had to reopen his incision and dig it out. The surgeon then had to pack the site with a medicated gauze. It took a long time with a lot of antibiotics for the incision to heal. It took a good 6 months before he was totally healed and feeling well.
For the next 17 years we followed the Doctors advice and kept Ryan active playing different sports and taking him to his regular doctors appointments. His aortic stenosis is what they were watching. There was several heart catheterization's and angioplasty procedures during this time. Ryan was small for his age and struggled some in school but this never deterred him. Ryan was and still is a hard worker and never gives up. We have raised Ryan that everyone has their own normal, his just happened to involve regular doctor appointments and procedures. His Dad has always told him that his heart is just like a car. He needs to go and get a regular tune ups to keep it running well.
Ryan had just turned 18 years old when it was determined to be the time for his Aortic Valve Replacement. This was also his senior year of high of school. Ryan was determined to play basketball and baseball his senior year. He wanted his surgery as soon as possible so he could be ready to play basketball in October. So in August of 2009 he had open heart surgery to replace his aortic valve. Ryan decided to get a bovine valve. As a family we had many intense conversations about a bovine valve which can last 10 to 15 years compared to a mechanical valve which last 30 years or more if it does not leak. The big issue Ryan could not get past was being on blood thinners at 18 years old. He did not want to be a 18 year old that had to live like a old man. One thing as a family we have come to a realization about a person with CHD is their quality of life is everything. We don't take that for granted.
During his open heart surgery they found that Ryan also had a Artial Septal defect. They were able to go through that hole to replace the aortic valve and closed it up on the way out. So he was actually born with 3 heart defects which is very common. The open heart surgery went well. He was released by his doctor and started playing basketball in October.
Ryan has been able to stay active after his valve replacement. He enjoys playing basketball and softball and working out regulary.
On October 22, 2016 while playing basketball with a friend Ryan went into Cardiac Arrest. Prior to this he never had issues with his heart's rythmn. Thanks to the quick action of Ryan's friend calling 911 and doing CPR he survived. However he had a tough road ahead of him. Two ambulance rides and flight for life to University Hospital. He was unconcious for over 48 hours from a noxic brain injury. Which is common when your brain is deprived of adequate oxygen. He was in ICU for 5 days his entire hospital stay was 15 days. Doctors did several tests trying to find out why this happened to a 25 year old who has been seeing doctors regulary for his CHD and leading a active life. They never could give us a difinitive answer. That is the thing with CHD things happen that can not always be explained or diagnosed. During his hospital stay he was treated for pnemonia and had a few broken ribs from the CPR that saved his life. There was the therapy that helped him get his motor skills back his short term memory is affected. There were family members he did not recognize at first and he had issues remebering where he was and why. Even two years later there are issues with memory that pop up sometimes. Once the pnemonia was gone Ryan was able to have a diffibulator placed in his chest. This device tracks his heart rate and will shock his heart if the rythmn ever gets out of control again. Once the diffibulator was in place he was able to be released form the hospital. For months after that Ryan went to physical therapy and cognitive therapy twice a week. He also had cognitive work to do at home on the other days of the week. There were alot of doctor appointments His hard work and drive to get back to normal were inspiring. Ryan was back to work part time in February. By the end of March he was full time. It took a full six months of hard work and determination to get to his new normal.
As a family we encourage you to join us October 28, 2018 to recognize the two year mark of Ryan's cardiac arrest by making a differance by walking to raise awarenss of CHD and raise money to honor Ryan and others that fight the good fight every day to conquer CHD.