I wanted to share a few tips I believe could help you choose the right doctor for your kids! As you may or may not know, both of our kids were diagnosed with congenital heart diseases. You have probably seen this abbreviated as “CHD”. Our daughter Bay has an electrical issue with her heart, hers is called wolff-parkinson-white syndrome (WPW). Brink has a structural issue that is called anomalous left coronary atery, that was repaired back in 2017. They sound like fancy words but to put it plainly, Bay has electrical issues and Brink had structural issues. The reason for this post is share some of our experience that will hopefully benefit you if you are in a similar situation or know someone who is!
When brink was about 2 weeks old he started getting sick back to back with symptoms that would look like bronchiolitis. Cough, wheeze, stuffy nose… the common cold in babies. What was weird to us is that he was sick all the time. Even though we weren’t too concerned at the time, we would take him to the doctor weekly because it didn’t seem right for him to be sick so often. We were repeatably told that his lungs and heart sounded fine, but we didn’t feel this was right. The next time it happened we took him to the ER, long story short her was admitted for 6 nights for pneumonia. He had pneumonia but what was missed was his enlarged heart that was overworking and three times the size due to his entire left side of the heart not getting oxygenated blood supply. We were discharged for the pneumonia but were not satisfied on the fact that they wouldn’t preform further tests on him, with the gut feeling like something else could be wrong. We went about our life for the next 3 months as normal and then brink got bad, his heart was beginning to fail. We took him back to the ER and demanded a CT scan where they discovered his heart defect. After some counsel and prayer, we decided to be transferred to a Children’s Hospital that would specialize in hearts and be familiar with his rare case. This decision changed everything! We met a staff that empowered us parents and cared for our son like we had never experienced before! I learned a whole new way of how the medical world can be so amazing. Here are some things to look for when choosing where your child will be taken care of!
- Choose a Children’s Hospital – We ended up switching both kids to CHLA for all of their doctors, the doctors there not only specialize on their specific specialty like cancer or cardiology BUT also Kids!
- Choose a doctor who considers your gut feeling – One thing we experienced at CHLA was how they valued our opinion and gut feeling with most decisions they made. They involved us in the process, and that created trust between us and the staff. Trust your gut, I believe we have an insight as parents to know how our children are doing like no one else does. I love how CHLA empowers this.
- Choosing a surgeon – The surgeon we met with first was no doubt fully capable of preforming Brinks surgery, but the thing that set Dr. Vaughn Starnes and his team apart (besides his remarkable reputation) was their approach to fixing Brinks heart but not replacing or changing his damaged valve. If he would have done this, it would have required more surgeries, but he has seen so many hearts and when he saw Brinks heart he hoped that over time his valve would heal itself and strengthen on its own without repair. I am grateful that we don’t have any further surgeries planned at this time!
Those are a few practical decisions that we had to face with Brink and his condition, one thing I can’t leave out is the importance in having a support system in your family and close-knit circle of friends. We had people praying for us and support us in many ways and that helped us a ton during this season of life. We all have hard times we face and having people standing behind you in prayer and love is vital. We have found this in our church, and we are grateful. Please comment below if you have any questions! Would love to talk to anyone who might be dealing with this!