Baby Sharon Committee Meeting 1/27/26
Present on the call were Sarah Owens, Haley Davis, Kelly Dunlap, Richard Emmel, and Patrick Casey, with Jacob Grummer of the ACH Social Work Department
Case 1: This case involves a 9-month-old patient admitted to ACH since May 2025. The patient is a chronic, medically complex patient, with multiple congenital anomalies, dysphagia, ectopic kidney among others and is tracheostomy, ventilator, GI dependent. The caregivers have been bedside since admission as one of the caregivers is self-employed and the other works for a family business. They have been managing with support of family but their long-term admission and need to get their home ready for patient’s discharge in the next month has limited their financial abilities even more. The family is hoping that assistance can be provided for a wagon. Due to the amount of medical equipment needed to go along with the patient’s every trip out of the house, the wagon would help carry the equipment and the patient and travel safely. Since as it has to be bigger than that of a singleton baby it has to account for the added weight and equipment it will carry, plus the patient. Therefore, we are submitting for your consideration the following needs: Wagon ($299). Total ask: $299.00
The committee approved $299 for the wagon.
Case 2: This case involves a nine-month old pediatric heart transplant recipient and family who are currently experiencing significant and unforeseen financial hardship due to compounding medical and family crises. Patient received a transplant in 2016 and have since endured multiple post-transplant complications including diastolic heart failure and stage 3 renal failure. It was determined in 2024 that the patient is a candidate for re-transplant, making the management of existing conditions critical and ongoing.
The caregivers are both employed and have historically demonstrated strong financial responsibility throughout this patient’s situation and have not requested or received financial assistance during the three years. However, a series of unexpected medical issues for caregivers and the patient sibling as well has one of the caregivers having to temporarily leave their employment to care for an out of state grandparent with the last two months. This has resulted in a temporary but severe financial strain that they are unable to overcome independently and therefore have become unable to make their rental payment. Therefore, we are submitting for your consideration a request for $750 for rent. Total Ask: $750.00
The committee approved $750 rent.
Case 3: This case involves a 9-month-old former premature patient diagnosed with Trisomy 21, complex heart disease and neonatal chronic kidney disease. The patient has remained hospitalized in the NICU since birth and had endured a prolonged and complicated course marked by multiple medical setbacks. Several months ago, the patient underwent a palliative cardiac procedure in hopes that they might grow enough to tolerate definitive surgical repair of their cardiac defects. Unfortunately, due to progressive renal failure, the patient is no longer a surgical candidate. The family sought second opinions at outside hospitals, which also declined to operate. The medical team initially recommended a palliative tracheostomy to allow the patient to go home and spend meaningful time with family; however, this has not been possible due to recurrent, serious infections over the past several months.
Over the past several months, the patient’s medical decline has required both caregivers to take frequent, unplanned time off work to respond to urgent hospital calls during episodes of decompensation. The one caregiver has exhausted all paid time off and is now taking unpaid leave. The other caregiver’s employer does not offer paid leave, resulting in lost income each time they are needed at the hospital. Since the patient has been placed on comfort measures and designated partial DNR, the medical team is erring on the side of caution and calling the caregivers in more frequently as the condition worsens.
Understandably, this situation has caused the family to struggle to keep up with basic household bills due to reduced income and mounting stress. Therefore, we are submitting for your consideration the following needs: 1 month of rental assistance, totaling $1,350, to help stabilize this family during this profoundly difficult period. This support would allow them to remain housed, focus on spending meaningful time with their child, and grieve without the added burden of immediate housing insecurity or financial crisis. Total ask: $ $1,350.00.
Jacob reported that this child unfortunately died last week. The committee noted that this request was made while the child was still alive, and so the committee approved the $1350 for rent.
Case 4: This case involves 3-year-old admitted to the PICU due to an episode of cardiac arrest.The patient celebrated their 3rd birthday in ACH PICU while on ventilator support due to AHRF in setting of persistent apneas that progressed to ARDS. Patient’s imaging indicated a diagnosis of an extra pleural paraspinal mass presenting with ataxia and rapid weight gain. The patient requires high ventilation settings and was diagnosed with ganglioneuroma. The patient’s caregiver has been present every single day at bedside, concerned, supportive, and loving towards patient and therefore has been unable to work. This has caused the family to rely solely on the other parent’s income which has caused the family to become financially strained in order to make their monthly payments. Therefore, we are submitting for your consideration the following needs: Rent ($1,460.95), Electric ($99.63), Gas ($446.48) Water ($109.10) and Car Payment ($500) Total ask: $ 2, 526.16.
The committee approved $2526.16 for all the expenses noted above.
Addendum: Jacob noted that the committee approved $1900 for use for gas cards and uber rides for Case 3 in the December meeting. He noted that ACH cannot provide that to patients, so he requested that we allow the $1900 be used for down payment on a used car.
The committee approved $1900 toward the purchase of a used car for the Case 3 of the December meeting.
