Valentine's Day...

Is also Congenital Heart Defects Awareness Day. Did you know that less than one percent of children (7 in 1000 births) are born with congenital heart defects(CHD)? I have had 3 live births and two children with complex heart defects.

My oldest, Michelle, was born with pulmonary atresia, ventricular septal defect, hypoplastic (absent left) pulmonary arteries - a severe form of Tetralogy of Fallot. Her life was a marked by a series of surgeries and procedures with intervals of relative peace and normalcy. My life was filled with prayers for as much time as I could have with her. When she passed away after a courageous battle for life, I was totally devastated. I took a great deal of comfort that she was in a place where there are no tears, there is no pain - healed and in heaven.

I think the hardest part of losing a child is learning to live this life again without them. She left a huge void in my heart when she went home to our Father in heaven. I resisted learning to live without her. In my irrational, grief muddled mind and with a broken heart I did not want to let go of her. My faithful Lord and Savior walked with me on my journey in grief, making me new in Him, gently bringing me to a place where I could step out and risk life and love again.

Fast forward a few years and Miss K. entered my life - beautiful, healthy and strong! Her only hospitalization was at birth and we didn't stay long! She only saw the pediatrician for well-child visits and immunizations. She gave me a taste of what might be a "normal" life as a mother. Now I know what it is like to parent a delightful teenager!

Not long after that I had a miscarriage discovered 10 weeks into the pregnancy - another devastating loss for me. Once again my dear Savior was there to guide us through our grief.


Two and a half years later my youngest, Miss R., was born. We had no prenatal testing other than routine sonograms to avoid any risk to our newest blessing. Back then the risk of miscarriage from amniocentesis was about 1 in 200. The results of any prenatal testing would not affect our decision to carry this beloved child to term. We waited with great expectation to meet her. She was delivered at a local community hospital - delivered by my dear hubby - after a short, uneventful labor. I knew immediately that she had Down syndrome (DS) and within an hour the pediatrician and pediatric cardiologist were examining her. Approximately 50% of children with DS are born with congenital heart defects. Deep waves of grief came - not because she had Down syndrome but because the echocardiogram showed a heart defect common to children with DS. Could I again live with all that goes with CHD - the anxiety waiting for repair and fear of losing another child?

Mother Teresa said - I know God will not give me more than we can handle, I just wish He wouldn't trust me so much - this my heart cried out too...

A few months passed, filled with feeding issues and appointments with various specialists. My whole life was devoted to feeding this beloved child and chasing after a very active toddler. I pumped breast milk, gave it by bottle, and nursed her 24 hours a day. I tried to hand over my anxiety to the Lord without much success but I felt His presence deeply as I worked to get her up to a safe weight for surgery.

Did you know it doesn't get any easier to hand your children over to the nurse who takes them into the operating room? I've lost count of the times I have had to hand my babies over. At three months of age Miss R. was ready for her repair. The repair was a complete success though complicated by complete heart block. She had a permanent pacemaker (a major procedure in infants - unlike adults where it is relatively minor) placed 10 days later. The pacemaker has little effect on our everyday lives - we do monthly telephone transmissions, visit the cardiologist every six months and occasionally Miss R. needs a pacemaker tune-up with a visit to the operating room. She is my Energizer kid!

I've known twenty plus years living with CHD. I call myself blessed for the time I have known with my children. I call myself blessed by the technology that gave me that time. I call myself blessed by the professionals who used their God-given talents to give me that time. I call myself blessed by their caring and concern over the years. Thank you, Lord, for placing them in my path - I've known the best of the best!

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast. To him be the power for ever and ever. 1 Peter 5:10-11