Jaden's Story

Name: Jaden
Born: June 21, 2011
Heart Condition: Hypoplastic Left Heart Syndrome

"Jaden's Story" - as told by his Mom, Kandis

My husband and I found out we were expecting twins in November of 2010, we were completely shocked to say the least. During my sixteen week ultrasound it was discovered that something was wrong with Baby A's (Jaden's) heart but it wasn't clear exactly what the issue was. The doctors thought the baby's heart wasn't fully developed but we had to wait four more weeks to find out exactly what was going on. At the 20 week ultrasound it was determined that our precious Baby A had a condition known as Hypoplastic Left Heart Syndrome, meaning only half of his heart had developed. We were beyond scared of what would happen once our boys were born but the doctors had a very specific plan of what would happen and were prepared for their arrival. I was blessed to carry the babies to 38 weeks and had a scheduled c-section on June 21, 2011.

Jaden had his first open heart surgery one week after he was born. He did fairly well after the surgery but his eating skills were not developing so he was in the hospital for about a month. About two months later we took him in for his regular cardiology appointment and his doctors found a pseudo aneurysm was narrowing so it was determined he would need his second open heart surgery. This was a rare occurrence with HLHS babies and the surgery was risky but Jaden made it through. He had his third open heart surgery in January of 2012 and once he was home he started to do really well.

In September of 2012 Jaden seemed to have developed a really bad cold. We took him into the ER at Children's Minneapolis on September 11th and thought they would give him some medicine and send us on our way. What we found out was absolutely devastating, we found out Jaden was in heart failure and would most likely need a heart transplant or it was unlikely he would live to see his second birthday. Jaden was transferred to Mayo and was critically ill. So ill that he had to be placed on a ventricular assist device to help his heart pump effectively. The implantation of the VAD put him at the top of the transplant list and he waited for four weeks until we got the call. On October 29, 2012 Jaden had his heart transplant.

He did well after and was released from the hospital just over a month later. We were required to stay in Rochester for a minimum of three months post-transplant because patients are still very fragile this soon after transplant and there are numerous appointments every day. During one of his echo appointments, his doctor noticed how labored his breathing was and Jaden was admitted to the hospital once again. He ended up being put on the ventilator because for some reason his lungs just weren't working like they were suppose to. He was intubated and extubated more times than I can remember and the doctors couldn't figure out what was going on. They eventually determined that Jaden needed a tracheostomy to help with his breathing. This meant he could eventually go home but he would need round the clock nursing. After about another month at Mayo they determined we could get transferred back to Children's while we waited on home nursing. Jaden was at Children's about two more months and was finally able to go home after seven months in the hospital(s).

Once Jaden came home he started to do great and his breathing improved significantly. He was able to get the trach out in September 2013 and has been excelling ever since. Once his trach came out Jaden found his voice again. He then started walking and talking non-stop. He can count to 20, knows his ABC's and can recognize all the letters. He is rapidly catching up to his best friend and twin brother Carter and looking at him today one would never know what this child has been through. Today Jaden is an active, happy toddler and it's all thanks to the donor family that made the decision that saved his life. Jaden still struggles with eating and still gets all of his nourishment through his g-tube but he is starting to take small bites of things here and there. We are hopeful with the help of a feeding clinic he will start eating orally again. We are so blessed and cherish every moment we have with our strong-willed little boy.

Getting the cake from Cakes From Grace meant so much to our family. We cherish every year our boys get to celebrate another birthday together and having a special cake really added to that joy. The cake was so cute and absolutely delicious!