Angela's mum Monica kindly sent in their story to share with you all.

When I was five months pregnant Angela was diagnosed with HLHS w/an unbalanced AV canal (in other words, she has a huge hole in her heart which caused the left side not to develop). The doctor who made the diagnosis made the scenario sound next to hopeless, and I will never forget that dark, awful day. The cardiologist we saw a month later was much more upbeat, told us that the chances of our getting a heart given Angela's blood type was good and explained the palliative surgeries. Having had such a bleak outlook we thought these were great choices! She told us we should think about both, and then they would do an echocardiogram after Angela was born and that it may be the choice would be made for us.

At that time I had no access to the internet and I doubt there was much about congenital heart defects available anyway (Winter 1995) so the rest of the pregnancy was spent waiting and trying to find any information at all. I found an article in BABYTALK about a child who'd had the staged surgeries and was doing terrific. It gave me hope and I carried it in my purse everywhere. But we were prepared for anything when Angela was born.

Her delivery was normal (June 19, 1995 )and the diagnosis was confirmed. We decided to go with the staged surgeries, especially because she was a very good candidate for them (she has a comparatively larger aorta and the hole in her heart saved a step during the Norwood procedure). Angela's first week before the Norwood was scary, at one point they thought she had blood in her stool which could have meant her organs were shutting down. Luckily that wasn't the case, but I emotionally was ready for them to operate when she was a week old. Her recovery was great with no complications. She went home two weeks later on a feeding tube as she was too weak to suck. She also had a reflux problem, which has been the major obstacle we've dealt with (I knock on wood as I type this). Her Glenn surgery was also a success, with the only complication temporarily high blood pressure which was down in two days.

Angela's reflux problem, which some children without heart problems also have, has been her major problem. I won't go into all the details on it, but she was hospitalized for dehydration twice because of it and for a while would not eat anything at all. She had a g-tube put in when she was eight months old and it was later replaced with a g-button. Her reflux problem was gone by the time she was eighteen months, but it affected her attitude toward food. She eats some food by mouth, and receives some pediasure overnight through her button while she sleeps. It's been a tough rode to get her to this point, and I never thought I would be so thrilled to see a child eat!

The info above might lead you to imagine Angela's a sickly child, but she's not at all. Currently Angela is 24 months old and doing great. To see her you would never guess there was a problem. She is so funny and smart, she keeps us laughing constantly. When she was 22 months old she told me, "No medicine, medicine is stupid!" Before she was two years old she could sing the alphabet song, Five monkeys jumping on the bed, Take me out to the ballgame, I just can't wait to be king, and more. She is very lively and into EVERYTHING!! She's rather stubborn, and maybe just a little bit spoiled (but I'm working on that). Her big brother Nicholas keeps her in her place and enjoys playing with her. She's a little slow with her gross motor (walked at eighteen months) but otherwise is exactly where she should be at this point. She just started preschool and is off all her medications as of last Tuesday (yeahhhhhh!!!!).

She'll have her Fontan surgery most likely next summer. Our Children's Hospital in St. Louis, Missouri, does them when the oxygen saturation levels are in the 70's. Hers are currently in the mid 80's. Her surgeon is using the new technique with the extra-cardiac tunnel and has had real success with it, which I find it very encouraging.

Everytime I hear of a prenatal diagnosis, I think of how the news was given to us and wish I could show them a picture of Angela. Most definitely, there is hope. I wish I had known that in those dark days of my pregnancy.

This is our story, I can't wait to read more of yours!

Sincerely,

Monica Farrell
Mom to Nicholas, almost 5 years old and Angela, HLHS w/Unbalanced AV canal, 24 months