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Posted: 8:39 PM Feb 11, 2010
Mother Brings Awareness to Congenital Heart Defects
For one mother expecting her second child, her developing baby's heart has lead to a major campaign.
Reporter: Carrie Cline Email Address: carrie.cline@wsaz.com |
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19 Comments 
HURRICANE, W.Va. (WSAZ) -- For one mother expecting her second child, her developing baby's heart has lead to a major campaign.
“I went in thinking pink or blue and came out thinking life or death,” Kathy Baker said.
Kathy and her husband found out their developing baby boy had a severe congenital heart defect called Hypoplastic Left Heart Syndrome, or HLHS, at their 20-week ultrasound appointment.
“The left half of his heart is not working," Kathy said. "After we found out, they said we could terminate the pregnancy or have him and just keep him comfortable until he died."
But, Kathy chose a third option — fighting for the little boy she had now named Jacob. That option included a series of surgeries starting when Jacob is two days old.
“Back in the 80s, his condition was 100% fatal," Kathy said. "Now, there’s hope with these surgeries."
1 in 100 babies are born with congenital heart defects and the resources are slim.
“More babies have congenital heart defects than have all pediatric cancers combined, yet pediatric cancers get five times the funding,” Kathy said.
Kathy started her own Web page to generate more awareness and hopefully funding. She even took her fight all the way to the West Virginia Capitol, where she petitioned Governor Joe Manchin to join dozens of other states and in proclaiming this week Congenital Heart Defect Awareness Week.
Kathy, her husband and their three-year-old son, Aiden, are anxiously awaiting the addition to their family with great anticipation.
“I want to see him play with Aiden and them be happy together," she said. "Then, I’ll know I’ve done everything I could have done to make sure he has a good life."
Kathy will deliver Jacob through a planned cesarean section at a Philadelphia hospital that pioneered a surgery for babies with this defect. They have a 93% success rate.
If you'd like to follow Kathy's journey and learn more about congenital heart defects or how you can get involved, click over to our Featured Links. We've posted a link to her blog.
Latest Comments
My name is Brad. My wife's name is Christy. We had a son named Jacob as well on 01/31/09 with HLHS. He was very very sick and fought for a 31 days. It was the worst and best 31 days of my life because it is so much stress put on the family. He unfortunately didn't make it and died on 03/02/09. My family's prayers are with you because we know right the feelings that you are going through and the fight that you have ahead of you. I miss you Jacob.
Our prayers are with you and your family. We have two kids in my extended family with HLHS. In 1992 my brothers son was born with that defect. He is doing well he will be graduating from high school this year. He works and goes to school. My son was born in 1996 and was in the hospital six weeks the first time he had feeding issues.He's in the 6th grade he has a pace maker and takes some meds. but is doing well. He plays baseball and golfs. You can not tell that they have had a rough start to life until they remove their shirts. We have vacationed together before and wow just watching the people at the beach turn their heads looking at the scares. The scares do not stop them from taking off the shirts. When they had their surgeries we had big family support there with us there was always someone in there with the boys in the hospital room throught out the days. We song and talked and touched them as much as we could. Babies are so strong and heal fast. Our prayers are with your family.
Well done for making more people aware! My daughter has heart surgery to repair large VSD & two ASDS. The doctors didn't realise till she was 6 months old even though she had all the symptoms of a heart defect!! She had poor weight gain, sweating, difficulty feeding, persistent cough etc! Had her weighted every week yet health visitors & doctors still did not mention her symptoms were that relating to her condition! Its so frustrating to think my daughter could have been much more comfortable given the correct medication prior to her surgery instead of struggling for 6 months! I hope all goes well with Jacob. Good luck on this brave journey xxx
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