We were so excited to find out we were pregnant. We quickly told everyone and started planning everything. How perfect life was!

At our routine twenty week ultrasound we were told that the “baby wasn’t in a good position” and that we should wait and come back in a week, no big deal. So the next week back for another ultrasound yet again the tech said the baby wasn’t in a good position and felt it would just be best for us to have a level ll ultrasound to get good pictures of the baby’s heart. We still did not feel like there was really anything to be worried about everyone we knew had perfectly healthy babies why wouldn’t we?

One week later on April 28, 2003 our lives would be forever changed. This doctor told us rather callously that our baby had HLHS: Hypoplastic Left Heart Syndrome. He told us, it is a very serious CHD; our child had a 1 in 5000 chance of getting this. He said how there are three choices, the first choice he gave us was to terminate the pregnancy, he then went on to tell us that we needed to make that decision quickly considering I was already 22 weeks pregnant, before termination he said we would need an amniocentesis. The next option, which he also said isn’t really an option anymore, but could be done is compassionate care, carry the baby to full term and then bring the baby home and the child would die probably within the first week of life. Then 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. He was actually very vague about the whole three-stage surgery option; there was no doubt that he felt we should terminate. He was a very arrogant man who did not have all of the facts. He also felt it was very necessary for an amniocentesis if we were even considering continuing with the pregnancy. We asked what the odds were for a miscarriage by getting an amnio he told us a chance of 1 in 200. We did not feel safe playing with those odds, and never did get one. We would follow our hearts and go with God’s will for her. This doctor couldn’t have been any worse in his “bedside” manner if he tried. He told us we would need to go see a pediatric cardiologist as he said, “So she could perform a fetal echocardiogram and confirm the diagnosis. This was on Monday; we would see the pc on Wednesday, and that seemed like a lifetime away. We went home numb-with so many questions and NO hope.

On Wednesday we met with the pc, we had a fetal echo performed and she did confirm the diagnosis. She then also sat with my husband Chris, my parents, my older sister, Chris’s parents and me. She knew about HLHS and explained it to us and also explained each surgery. On Monday we felt so hopeless and lost, now on Wednesday we were starting to feel like there was a chance for our baby. She told us where we needed to be and recommended a PC that could continue with our care. We met with our PC and 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 is definitely the pediatric cardiologist for us. We needed someone who believed there was a chance for our baby like we did.

We also had to change Obstetrician’s because they wanted me to deliver Grace closer to the hospital she was going to be taken to once she was born. When we met with this doctor she actually said to us “You are both still young enough to have other children” It still makes me so sad to think that doctors feel like you can just have another one and replace the one who is not “perfect” in their eyes, any mother knows all children ARE perfect. Thank God we followed our hearts.

This was still a very scary and unsure time in our lives but we know there are no guarantees for anyone in this life and without trying to do something we would have lost her for sure. As hard as it has been sometimes the good outweighs the bad tenfold. She is the light of our lives. Grace is now 17 months old and doing wonderfully, she has had two of the three needed surgeries and is one of the happiest babies I know. Who knew one tiny child could teach us so much about life, love, and true happiness. She is “Our Amazing Grace!”

To learn more about HLHS or to read Grace’s whole story and get updates please visit: ~Grace's Space~