We had our little girl February 16, 2005 after 3 long days of labor. We were hoping for Valentines Day but she had other plans.  We had Tara (Powe) Poulin as our birth Doula.  Having a Doula was a wonderful experience.  Tara made it extra special because she also has a heart baby.

  Our little girl has a very complex congenital heart defect.  She had aortic atresia with a severely hypo plastic arch.  She also had an asd and a vsd. We were very lucky in the fact that she has 2 good size ventricles.  Her defect was first spotted on a level two ultrasound at Boston Brigham’s and Women’s hospital.  She was officially diagnosed in utero at Boston Children’s Hospital at approximately 18 wks.  She had her open heart surgery in Boston at 2 days old. She has a conduit in her heart which will need to be replaced as she grows.  She will need to have more open heart surgery throughout her life (which is unfortunate ….but we are thankful they CAN help her and her next surgery will not be as complicated.)  She is on 2 heart medications she takes twice a day. She will most likely be on heart meds the rest of her life. She had a few bumps in her first year.  She needed two heart catherizations . She also had “sludge” in her bile duct that caused cholestasis (infection) and kept us in hospital for 2 weeks of antibiotics. The “sludge” they feel was caused by her open heart surgery.

 We are not sure when her next surgery will be however we know we are getting closer to her needing more intervention.  We see our cardiologist every 4 months now she had been going every 6 months until recently. She now has an increased gradient in her out flow track and will need a catherization when this number gets to about 70.  This is caused by scar tissue in her heart due to her complex Open Heart Surgery.  Something that was not a surprise due too all the work her heart has needed.

She is active four ½ year old who attends pre-school and takes dance, swimming, ice skating, piano and gym. She is a special little girl and loves to make people smile.  She touches the hearts of those she meets.

We are very grateful to all the wonderful doctors and nurses at Boston Children’s Hospital without them we would not have our little girl.  Children’s Hospital Boston saved her life.  
The Rogers