Greetings everyone!
We wanted to say hello to everyone on this forum.
We became first time parents in September 2012 to our beautiful baby girl, PrincessM.
8 days later we received that shocking first phone call many of you have also, that our daughter's newborn screen flagged abnormal. At the time we wanted to believe that it was nothing, that maybe PrincessM was just a carrier like her mama. Her father was never tested for thal, mainly because he was never anemic, showed no signs of being thal minor, etc. In the United States, and in the state of Texas, the blood work is then forwarded for complete DNA testing and we received the bad news that she has two mutations (beta 8/9 +g and IVS-I-5 G>C).
Needless to say there have been many tears and worries and fears. While doing initial research we stumbled upon this website, and although overwhelmed with so much info, it was a very positive support in those early dark days.
She's now 15 weeks old. She's being seen at Texas Children's. Her hemoglobin at her last checkup was 8.7. Down from 9.5 the month before. It's very frustrating out here. We have one of the best medical centers but not for thal. How I wish we lived in Boston or Oakland where doctors see dozens of thal patients at a time. She's one of a very few thal patients mixed in with loads of sickle cell patients. We have yet to find any local support so we are hoping we can find it here, in addition to making new friends along the way.
Thanks again to Andy and everyone else for all the info offered here. Reading this forum really pushed me and my husband to try and find normalcy in our lives again and enjoy our Princess.
Will be asking tons of advice and questions over the course of her infancy... Talk to you guys soon
![:)](http://www.thalassemiapatientsandfriends.com/Smileys/classic/smile8.gif)
PrincessM's Mama