BENEFITING: Children's Miracle Network
On June 29, 2012, when Elizabeth was just 20 weeks in the womb, we received the news that she had an abdominal birth defect. We were referred to see a specialist in maternal-fetal medicine and found out on Monday, July 2 that the defect could be indicative of a few different genetic disorders, including Down’s syndrome and two others that are lethal.
Thanks to a new blood test that can be performed in pregnancy at no risk to the mom or baby, we were able to determine about a week later that she did not have any of the three disorders that were tested for (the most serious ones).
A few weeks later, during one of our routine ultrasounds, it was noted that she appeared to have a large tongue. This, in conjunction with the abdominal wall defect, meant that it was likely that she had a condition called Beckwith-Wiedemann Syndrome. In short, this condition causes overgrowth of certain organs early in life which can increase a child’s risk for certain types of tumors (of the liver and kidneys). It doesn’t affect development or learning. You can learn more about the condition here, if you are interested.
After a difficult pregnancy, Elizabeth was born about six weeks early on October 3 (primarily due to Mom’s health issues, and not hers!). She immediately had surgery at Children’s Hospital of Wisconsin to repair her defect, and everything went beautifully. She was also tested officially for Beckwith-Wiedemann syndrome and the results came back positive.
Elizabeth spent about four weeks in the NICU catching up from being premature, and came home a happy, healthy baby. Since she was born, we have spent a lot of time at Children’s Hospital – she receives regular screenings for tumors, along with help for development (due to her being premature and having a large tongue). We’ve also had the normal visits to urgent care for ear infections and all the fun things parents have to deal with. Everything has been going well, but we are so grateful to the Lord for providing such amazing doctors and other healthcare providers.
But wait! "WHAT'S WRONG WITH HER HEAD?!" You ask. "WHY IS IT SO BIG? WHERE IS ALL HER HAIR?!" You exclaim. That's a result of another genetic abnormality called I Inherited Some of My Father's Genes.
But to be serious again, God has truly blessed us with the opportunity to provide the best medical care we can for our daughter at Children's Hospital of Wisconsin, which is part of the Children’s Miracle Network Hospitals, and we want other children to be able to receive the same privilege. In lieu of gifts for Elizabeth's second birthday, please feel free to donate to the Children's Miracle Network Hospitals.