Thursday, November 17, 2011

The Diagnosis

This is the story of our daughter, who has been diagnosed with a major heart defect. This blog was inspired by others like it. Reading about other families and their experience with Hypoplastic Left Heart Syndrome has been a comfort and a blessing to my husband, Michael, and I. Hopefully, Katherine's story can do the same. In addition, we will be using this blog to update family and friends on Katherine's journey as it unfolds. Below is the email that we have sent out to family and friends upon finding out about our daughter's diagnosis. I am currently 25 weeks pregnant with our little blessing and she is currently happy and kicking away in her little home.
During our first ultrasound, the ob was not able to see the heart very well so we were referred to another doctor for a level II ultrasound. That doctor, Dr. Stephenson, said that there was a heart defect but that she wasn't sure which one so we were referred to a pediatric cardiologist. We went to see Dr. Bensky (the pediatric cardiologist in Charlotte). He did another ultrasound focusing solely on the heart. This time, she was in a really good position to be able to see the heart and exactly what is wrong. He said she does have Hypoplastic Left Heart Syndrome, meaning that the left side of her heart closed off very early in the pregnancy and did not grow. Right now, the right side of her heart is doing everything, and with the way that the heart performs in the womb, he said it should be a normal pregnancy, that I will be able to deliver normally barring any other circumstances, and that she is perfectly happy in the womb and not in any distress. When she is born, they will have to give her a medication that will keep certain pathways in her heart from closing up (these pathways close up in all babies within about the first week without the medication). This will enable her to stay alive until her first heart surgery (the Stage I Norwood w/ Sano Shunt), which will occur 4-7 days after birth and is the longest, most intensive surgery that she will undergo. She will need to be in the hospital for 3-6 weeks following this first surgery. Her second surgery will occur between 3-6 months (the Glenn - Stage 2), and her third surgery will occur when she is 3 years old (the Fontan - Stage 3).
God has really been watching out for her, because babies with this heart defect that are not discovered in the womb, tend not to be found until it is too late. (Edit: Although I have recently read some stories where the condition was caught and diagnosed post-birth, and still treated successfully. Thank you for your stories of hope!) Also, we are blessed enough to live so close to the medical facilities and doctors that she will need. There are two congenital cardiovascular surgeons (focusing solely on baby heart operations) that work as a team together right there in the same hospital where we will end up needing to deliver at. They have done about 20 of these surgeries together and the senior surgeon of the two has done about 15 a year for the past 10 years. They also have a very very low mortality rate on their surgeries, much lower than the national average. We are doing ok emotionally and will continue to pray and trust God in His plan. It is just amazing how He has made sure that so many circumstances fall into place in order for her to be in the best hands possible. Please keep her in your prayers, along with the surgeons and medical personnel that will be taking care of her.

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