Congenital Heart Disease Support Group

Hi, I’m Mary. I’m a 44 year old mother of 3 beautiful kids and married to my lovable teddy bear of a DH for 11 years and counting. We currently reside in Northeast Ohio.

I’m a bit humbled that I should have been chosen to help lead any group, since “leadership” has never been a quality that I would have ascribed to myself. But, I will do my best to be welcoming and helpful to all who choose to join us here. Though we have many medical maladies in our family, I have chosen only to join groups that are most affecting my life at this moment, or those groups that I felt could benefit most from my knowledge and experience.

I have currently been tapped to lead the urinary incontinence, eczema group, and congenital heart defects groups. Not that I am an expert at all, but that these groups could use some TLC and I’m a willing and available servant. If you feel that you are better qualified to lead, or co-lead, please feel free to inquire! I am by no means the final authority on these subjects. (...in fact, I know next to nothing about eczema! Someone please teach me the ropes!)

As I said, I am the mother of 3. My oldest is a 20 year old college student who has been Type 1 Diabetic since age 2.5. My second son (age 10) was born with severe congenital heart defects — Shone’s Syndrome and borderline Hypoplastic Left Heart Syndrome (HLHS) — and underwent two open-heart surgeries before he was 2 months of age. Following the first two hair-raising years of his life (jam-packed with fun-filled medical traumas), son #2, to the amazement of his cardiologist, has now become virtually maintenance-free! (This can be quite rare among children with defects this severe.) My darling daughter (age 8) is asthmatic, has allergies, and experienced her first ever, full-blown case of eczema in Spring 2008.

My DH, a computer network administrator by trade, has been asthmatic since his youth and also suffers from high blood pressure and depression. As for myself, I have been a stay-at-home mother since the birth of son #2. Medically, I am hydrocephalic and have Crohn’s Disease in remission. I have had an Endoscopic 3rd Ventriculostomy (ETV) in 2002 and shunted with a programmable shunt in 2004 as treatment for hydro. (Obviously, in a household like mine, we've seen more doctors than I care to mention.) I came to MD Junction in June 2008 frustrated with my incontinence (symptomatic of hydro) and looking for a place to vent about wetting myself… AGAIN!

My hope is that in leading these groups we can help each other cope with our infirmities and uplift each other. We’ve all experienced our share of hardships and heartaches; let’s encourage each other as we make strides to lead productive lives. Feel free to PM me, and I’ll get back to you as soon as I can.