Team Em & Em

At 16weeks, I was diagnosed with twin to twin transfusion syndrome and was told that it has an 80-100% mortality rate and if I didn't get treatment in Cincinnati both of my girls would for sure die before 20 weeks. I went to Cincinnati children's to have a laser procedure to separate the vessels of the cord between my girls. However they were found to have had a fused cord (which they haven't ever see ) And were unable to do the laser procedure to fix the and even blood flow between the girls. One things they were able to do was cut holes in the membranes between the girls so that Emily could have more amniotic fluid and Emma would have less. Being stage 3 (and stage 5being fatal death they didnt think we'd make it) However this Worked. At 25 weeks 6 days. Emily was showing reverse end diastolic blood flow and they needed him emergently delivered. Emily the donor (with little blood flow,nutrients and amniotic fluid) weighed in at 1 lb 9oz . Emma, the recipeint (the one getting too much blood flow,weighing in at 2lbs 2oz. Emma's NICU stay was 143 days and she came home on oxygen, with a gtube. She was later diagnosed with spastic cerebral palsy and has overcome many obstacles that have set her back w her development. Emily's NICU stay was much more complicated. At 2 mos old, her parents were told her lungs were too sick to survive. However she would show signs of improvement and her parents were not ready to let go. Her mom reached out on FB micropreemie support group and learned about Nationwide Children's in Columbus where they specialize in Emily's lung disease and saved other babies similar to her. At 7 mos old, she was moved to NCH where she immediately improved. At 22 mos, Emily's lungs had finally improved enough and grown enough new tissue that she could go home. Doing her discharge workup they found masses on Emily's liver and she was diagnosed with Hepatoblastoma. This is a liver cancer more common in preemies. She was able to leave the NICu after 693 days . She has since undergone 5 rounds of chemo and will need a liver transplant before getting her last round of chemo. We have had a long 2 years of ups/downs but no obstacle is too big for my girls to achieve!! We are now raising money for our family during for our tranplant stay! Heather Smith