Sarah’s Medical Flight to MN

Sarah was diagnosed with Thanatophoric Dysplasia Type 1 when she was 22 weeks gestational age. It was confirmed via genetic testing, and a fetal MRI showed she only had 23% of the lung volume of an average baby her age. Every doctor we have had said she could not survive outside the womb, even with medical supports (and some doubted she would survive to birth or the birthing process).

Sarah was born at 32 weeks 3 days gestation, and continues to grow and survive. She is currently 8 weeks old, and still on ventilator support for breathing, but needs to grow for several more months and have 2 surgeries, a tracheostomy (breathing tube in her neck) and gastrostomy (feeding tube into stomach), and possible others before she will get to leave the NICU. 

Her mother, oldest brother, and herself are currently in CA. Her father, and two other siblings live in MN. Parents and doctors and case managers at the hospital have attempted to get Sarah to Children's Minnesota hospital several times, but the parents' insurance companies continue to deny the requests for air transport. All other aspects of the transfer have been approved and accepted, except for the insurance companies.

Once Sarah has grown and is stable enough to be discharged from the hospital, she will need 2 full time, round the clock caregivers with her at all times, which poses a huge issue when our family is separated by several states.

Her mother has already resigned from her teaching position, and travels over an hour each way, to be with her every day at the NICU, and researches, and advocates for Sarah to doctors who do not understand her diagnoses, and do not know how to treat her.

Staying in CA is not an option for Sarah. She will not get the treatment she deserves from doctors who understand her condition, she will not get released, as she will not have both caregivers in the same household, and she will not be able to travel home until medically cleared to drive halfway across the country, (which also poses risks due to the distance and time it will take to travel that far in her condition). Being medically flighted from her current hospital to Children's Minnesota is the only option she has to survive, thrive, and live the fullest possible life she can have, and have her family together again to support her.

Sarah is a medically fragile baby girl who continues to fight, and desperately wants to live. She needs your support to help her get medically flighted to Children's Minnesota hospital, where she can get the best care, by doctors who have successfully treated and are currently treating other babies and children with the same condition.

 Thank you.