When Bentlee’s mom, Caitlin, joined our Year of Sunshine Family, she became part of a supportive community that has encouraged her as she cares for a young son who struggles with incurable congenital heart defects.  Along with monthly mailings, she’s received personalized cards in the mail as well as daily prayer. 

She shared with us her story of missed diagnosis, emergency surgeries, and ongoing care of a child with a heart defect. Scroll down to read her story. 

A Rough Pregnancy for Mom but Baby Looked Great

To say our sweet, beautiful boy changed our lives is an understatement. When we decided to try for a child, we were so blessed to conceive quickly & without trouble. Though throughout my pregnancy I was sick. So sick. On top of having hyperemesis gravidum, I had my gall bladder removed and two kidney procedures done.

They continuously monitored Bentlee, my sweet unborn baby, through all of the trouble I was having. At every appointment, Bentlee checked out great. He was the most active baby. I swear he did backflips in my belly. It just took one appointment to shake us up a bit. 

At his 20-week anatomy scan, they saw a bright spot in the heart. They assured me that it was nothing to be concerned about and most times, it’s just a shadow from the ultrasound angle. They scheduled me for more pictures of his heart just to be sure though, and those would be with the maternal-fetal medicine doctor. 

I went to the second anatomy scan where the technician focused on Bentlee’s heart for the full hour. She was beaming with happiness when she told me that everything was clear, and there were no abnormalities in Bentlee’s heart. My doctor seconded that statement by reassuring us that the scan was clear. We were so relieved Bentlee did not have any complications in his heart! 

The Doctors Had Missed Something

Fast forward to December 6, 2019, and Bentlee was born. He had the sweetest curls and the raspiest scream. 

Bentlee was requiring a little extra help to transition to the real world. My labor and delivery nurse had a gut feeling something was off with Bentlee and decided to call the newborn intensive care unit (NICU) for a consult.

When NICU came in, they brought a pulse ox machine and hooked my baby up, only to see his oxygen was 66%. They quickly took him to the NICU for additional testing. They called me after a few minutes to let me know they were marking Bentlee off as a respiratory patient because Bentlee was actually a cardiac case. They would be running an EKG and echocardiogram, as well as calling the local pediatric cardiologist. My heart was completely broken because his heart was supposed to be fine. We had so many questions.

I love that she sends me prayer requests without me having to ask. We have become a part of her community.

Alex, Caitlin’s Year of Sunshine Care Partner

I made it to my post-partum room, and a neonatologist met me there. He told me he did not have all the information yet, but what he could tell me was that my baby had a major heart defect that required open-heart surgery. Bentlee would have to go to St. Louis Children’s Hospital very quickly to have a life-saving procedure. 

Fear, anger, grief, sadness — all emotions I felt. Thankfully, I was able to leave eight hours after I had Bentlee and go be with him.

Open Heart Surgery at Five Days Old

At 5 days old, we sent our sweet baby boy back for his open heart surgery due to complications, his six-hour procedure turned into 10 1/2 hours. 

A major complication Bentlee had during surgery was bleeding. He bled out on the table and had to have multiple transfusions to save him. We are so thankful he recovered well and is thriving today! We truly believe God is the ultimate surgeon and we know He had a hand in Bentlee’s time open on the table. 

Although he had this procedure, it is not a cure. Congenital heart defects are incurable. Surgeons can only mend the issues. At two years old, Bentlee is currently dealing with narrowing of the pulmonary arteries (pulmonary stenosis) and enlargement of the aorta (aortic dilation). He is also severely immunocompromised due to having to have his Thymus gland removed in order for the surgeons to access his heart during his procedure. 

Finding a Community of Support 

Spreading Sunshine and the Year of Sunshine has been such a blessing to my family. The boxes always seem to come when we need them most. It’s a reminder that we don’t fight this battle alone, and my son, Bentlee, has a huge cheering section cheering him on as he walks this journey with Congenital Heart Disease. We’re so thankful that a group of people would care so much and are so willing to walk this journey with us as a family.

The future is unknown, but we are strong in faith that we will be spending many years with our sweet guy. To God be the praise for our sweet miracle baby. 

A Year of Sunshine and a Community of Cheerleaders

Spreading Sunshine and the Year of Sunshine has been such a blessing to my family. The boxes always seem to come when we need them most. It’s a reminder that we don’t fight this battle alone, and my son, Bentlee, has  a huge cheering section cheering him on as he walks this journey with Congenital Heart Disease. We’re so thankful that a group of people would care so much and are so willing to walk this journey with us as a family.