Stacey Lampman’s son, Mitchell, was born 11 years ago at Mary Washington Hospital and immediately taken to NICU where it was discovered that he had some abnormalities with his heart. After following up with his doctor, Mitchell was diagnosed with a congenital heart defect. During that visit, the doctor inquired about the family health history and was concerned about Stacey since, after having Mitchell, she was having some significant problems. She was told she would have to have open-heart surgery in the immediate future.
1 Family health history is important.
We have a long, complicated heart history in my family. Both maternal and paternal grandfathers passed at early ages from heart problems, and my maternal and paternal grandmothers and cousins had significant heart issues. Mitchell and I both share the same body type, unfortunately for him. Somehow, his sister and brother escaped these issues.
Stacey was told that Mitchell probably would not be able to attend school regularly He was diagnosed with an aortic defect, enlarged aortic root, mitral valve prolapse and POTS (postural orthostatic tachycardia syndrome). Despite the odds, Mitchell is now in 5th grade at Ferry Farm Elementary.
2 Having a supportive school system is crucial.
All of his teachers and the administrators have always gone out of their way to help him. They create class lesson plans that would interest him, encourage a positive attitude, and continually praise him for all of his efforts. They are our eyes while he is at school.
3 Accept support when needed.
We have had so much support from so many people. Our family would drop everything they were doing to help us. I have great friends who would travel with me because I was always afraid something would go wrong, and we have friends who would watch the other two kids while we went through appointment after appointment…oh and they made cookies!
Our church was also behind us all the way.
When we have temporarily gotten back on our feet, we continue as if life is normal. All those same helper folks step up and play along like nothing has ever happened. I love them for that.
4 You must become an “expert” or hire an expert.
With this type of issue (and I’m sure along with all medical issues), you have to suddenly become an expert in that field, so you understand what you are reading in the records. You either need to hire a third party advocate or advocate for yourself. It’s a full-time job. I have three giant binders of all three of my children’s records. I always have a third party at every appointment. When you are receiving information that stuns you, you need a gentle person that you trust to take the notes and ask the questions.
5 My child is absolutely amazing.
When you meet him (we call him Buddy after his great grandfather Buddy Mitchell) you would never know he has all of these issues. He is all boy…an adventurous child, sweet, happy, outgoing. He loves animals—we have a reptile room. He plays soccer and swims. He works harder than anyone I know. He’s educated about his health history but has never let that affect his attitude. The one thing we have learned about heart issues is that it is a game of patience. You never know when things are going to change.
Kerry Pinto is a freelance writer living in Stafford.
Photographs provided by Stephanie Johnson of BabySnap Photography.