Grace was born in September of 2003. She is truly one of the happiest, sweetest, energetic, spunky little girls you will ever meet! Grace was born with a rare and very serious Congenital Heart Defect (CHD), Hypoplastic Left Heart Syndrome (HLHS). This essentially means she was born missing half of her heart. During pregnancy the left ventricle (the main pumping chamber) did not grow properly. This CHD would require her to have 3 open-heart surgeries.

We learned of Grace’s CHD while 22 weeks pregnant, during a routine ultrasound. Our lives were forever changed. The doctor who told us about Grace’s heart unfortunately was not a compassionate man. He gave his opinion that we needed to terminate the pregnancy. Almost as an afterthought he told us that there were a few hospitals performing “this three stage surgery” he said it was very risky, and he also gave his opinion that these children would not have a very good quality of life.

Thank God we were referred to Children’s Hospital Boston to meet with a pediatric cardiologist (PC); we were finally given hope for our daughter. When we met with our PC we still remember him saying “when one of your children is diagnosed with this you choose to either be in, or to be out, you have chosen to be in, now we concentrate on the positive!” That is when I knew he was definitely the PC for us. We needed someone who believed there was a chance for our baby like we did.

Grace had her 1st open-heart surgery (Sano) at just 6 days old, and spent five weeks in the hospital. She had her 2nd open-heart surgery (The Glenn) at 5 ½ months old, that time only spending four days in the hospital. In October of 2006, at age 3, Grace underwent her 3rd open-heart surgery (The Fontan), this surgery completed the 3 staged-palliative repair this heart defect requires and hopefully this will be Grace’s final open-heart surgery. In June of 2010 Grace had a cardiac catherization to close her fenestration (a hole left during the third surgery). We were once again reminded of what a strong and amazing little girl Grace is. She spent the night in the hospital and we were on our way back home the next morning! This was a huge blessing for us, as with her 2 catherizations in the past she had experienced complications which required longer stays.

For us, Children’s Hospital is where we first found real hope for our daughter, and where we continue to receive hope and encouragement. All three surgeries have been performed there and we know there is no other place we would want her to be cared for. Grace has spent more than 10 weeks at Children’s Hospital, has had cardiac catherizations, numerous doctor appointments and she will continue to have a lifetime of care there.

We are so thankful that Grace is now past the ‘planned’ surgeries and interventions and she continues to thrive and do wonderfully. She is a beautiful little girl who inspires many and reminds us all to enjoy the small gifts in life. She is 7 now and in the 1st grade, she played soccer again this past fall and currently enjoys her horseback-riding lessons. Grace is also a great and proud big sister to 2 younger sisters.

She is, “Our Amazing Grace”, and we live with the hope that she will continue to do as well as she has and have a happy, healthy long life.

To read Grace’s journey or to get updates please visit:
www.hearts-of-hope.com/grace or www.caringbridge.org/visit/gracec