Little Doug's Story

Little Doug was a complete surprise from the very beginning and came into this world with a dramatic flair. I thought I was infertile and unable to have children, so it was a big surprise when I found out I was pregnant. Then when he arrived, I was in for another surprise because he was born at home in my bathtub! He made it on all the local news stations. He came 5 weeks early and stopped breathing shortly after he was born. The paramedics were able to revive him, but he gave us quite a scare! Since then, he has kept us all on our toes! He is nothing short of a high-energy, super active, quick-witted, confident little bundle of joy. And as far as we knew he was a super healthy little kid. 

In August 2020, only two months after his 6th Birthday, Little Doug got sick suddenly. We took him to the ER thinking he had a bad stomach bug, only to have them tell us his heart was larger than an adult’s heart and that an ambulance from Children’s Hospital was on its way to get him. Little Doug most likely had viral cardiomyopathy (heart failure) caused by a virus attacking his heart. Nine days later on September 8 (also my birthday…worst.birthday.ever), in order to save his life, he underwent open heart surgery where they placed two heart pumps in his heart. The one on the right side was an external pump called an ECMO and the one on the left side was an internal pump called an LVAD. Six days later the pump on his right side clotted off and stopped working. Luckily his right side had recovered enough that it took over on its own, so they took him into surgery and removed it. Because Little Doug is larger than the average 6-year-old, they were able to put an adult heart pump in him rather than a pediatric one. However, the team at Children’s Hospital wasn’t sure if it was going to be possible/safe to send a 6-year-old home with an adult LVAD, as they have never sent a patient that young home with one before. The team has not even really treated an LVAD patient that young before! But Little Doug likes to surprise us all, and two months after he arrived at Children’s Hospital, he walked outta there! 

Since being home, he has continued to surprise his heart team and parents with how well he is doing! He is literally rocking the “LVAD Life”! He has a super positive outlook, and he loves his LVAD which he proudly named “Venkman the VAD” (He is a HUGE Ghostbusters fan). Unbelievably, he seems to have even more energy now than he did before--and that’s really saying something!! He has a huge appetite and continues to surprise his heart team with his growth. He loves school, bowling, playing video games, and continues to make us all laugh on a daily basis! Little Doug has very few limitations. He is living his best life! Like all LVADers, he can’t go swimming, which used to be his favorite thing to do. He takes heart medications and has to do dressing changes a few times a week. As a family, we have taken on a new heart healthy diet plan as well. In the beginning the team wanted to see Little Doug quite often but now that he has proven how well he is doing, they only see him once a month. Moving forward, we are believing for a total healing of Little Doug’s heart. His EF (ejection fraction) when he was diagnosed was 12-14% and now with the help of the LVAD is it at 30-40%. He is doing amazing on the LVAD and the team is willing to let us wait a little longer to see what the heart does before discussing transplant. We are taking it one day at a time, praying for a miracle of a fully recovered heart, while being open to whatever is best for Little Doug. We are SO THANKFUL to God for giving us Little Doug, and so thankful to Him for the medical technology and care that saved his life!