We are Nicoletta Sozansky and Jitendra Gupta and our baby girl Aspen was diagnosed with LCDH (Left Sided Congenital Diaphragmatic Hernia) on April 23 2021 at 19 weeks gestation. After the initial diagnosis (CDH is a rare defect happening in 1:2500 kids), we were trying to find the best place for Aspen to give her the best chances and outcome when it comes to surgery. Through the social network of CDH moms we came across John Hopkins All Children Hospital and Dr Kays whom we consulted at the beginning of June. After talking to dr Kays and his team, we were sure that we want our baby to be under his care and we wanted him to do our Aspen’s CDH repair.
At the end of July, when I was almost 34 weeks pregnant, Aspen’s dad and myself have relocated from Warren, NJ (I flew and Aspen’s dad drove) to St. Petersburg, FL. We have incurred significant airline tickets costs as well as gas/car expenses while driving two days from NJ to FL and while staying in St. Petersburg. Since we weren’t able to pack all that we needed, we also had to purchase supplies and other essentials (like pots, pans, plates, bathroom items). During our stay in St. Pete we have also incurred significant costs related to our car repair since our car wasn’t equipped to handle such a long drive.
Aspen's mom (Nicoletta) has maternity leave however it is only being paid at 60%. Dad (Jitendra) does not have any parental leave what forces him to take unpaid days off from work. Since Aspen requires specialized care, Nicoletta's maternity leave may not be enough and she would have to take unpaid time off to care for her.
As of now our baby is under dr David Kays and dr Stacey Stone's care at John Hopkins All Children Hospital. Aspen has been inpatient in the Congenital Diaphragmatic Hernia Unit (CCDH) at Johns Hopkins All Children’s Hospital in St Petersburg, FL. She has been inpatient since birth – 8/30/2021 and is preparing for discharge on 9/18/2021. Aspen has a history of Left Congenital Diaphragmatic Hernia with repair (surgery) on 09/03/21, Pulmonary Hypertension of Newborn, Pulmonary Hypoplasia and Respiratory Failure of Newborn.
While being here in St. Petersburg, we are still obligated to pay our mortgage for our house in NJ and all house expenses which is a significant financial burden for us.
Would like to ask you to please kindly review our case and help us with the grant that would let us offset the cost of relocation as well as expenses related to our stay.
I can provide all receipts for the mentioned above. Please let me know if this is required.
Nicoletta and Jitendra