Tomorrow we have an appointment scheduled at St. Johns to have a fetal ecchocardiogram performed on Bayta. This test will hopefully give us some more infor on how her heart is doing. Often times even perfectly healthy babies have small holes or "leaks" in their hearts that heal themselves naturally. Because we have done so many fetal ultrasounds they often find the "minor" defects when looking for the big ones. Our fetal medicine specialist says it is unusual for children with this condition to "grow" a heart condition so if we make it though this test we will feel a lot better about her outcome.
They will again measure all the baby's limbs, look at brain structure and spinal structure and the state of the omphalocele itself. The other issue with the head is a condition called Pentalogy of Cantrell in which the heart tilts to a weird angle because the diaphram does not support it because the liver and bowels are not in the right position.
After the test tomorrow... we have to make a decison about where to have her... Here in Springfield, or Possibly St. Louis... More about that in anoter blog!
Darick
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This Blog was created to help us tell the story of our daughter Bayta and her batles with a rare birth defect called Omphalocele. She is now home but has an even rarer diagnosis of Pentology of Cantrell. It is our desire that this blog, the good the bad and the ugly parts, can be used by other families to help guide them through the scariest experiences of their lives!
Welcome friends and family
Thank you for viewing our blog. We wanted to thank everyone for all their prayers and kind words... but we were getting overwhelmed... so we started this blog. If we don't answer your questions then send us a line and we will try to update the page regularly. Bayta is now at home. She has a small scar and a slightly imperfect belly button to show from her ordeal. Her father has more gray hairs than he would like to admit. If you have a child with an Omphalocele, gastroschisis, or Pentology of Cantrell call us and we will be happy to talk to what we have been through. If you have a question about Bayta, us, Children's Hospital in St. Louis, Ronald McDonald House, our Doctors, our Nurses, or the defects listed above email me Lawyer4rent@gmail.com.
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