Baby Sharon Committee Meeting June, 2026
Committee members on the zoom call were Richard Emmel, Haley Davis, Sarah Owen, Kelly Dunlap and Patrick Casey with Jacob Grummer of the ACH Social Work Department.
Case 1: This case involves a three-year-old child diagnosed with Nephrotic Syndrome. They were initially diagnosed in March and had two relapses since then. They were hospitalized in March, April, and currently admitted since May. They are admitted for relapsed Nephrotic Syndrome with fluid overload, edema, and ascites. The syndrome in children does not have a “cure” but is treatable. However, it may be years before the child outgrows the disease, sometimes not until late teens. The syndrome causes children to have too much protein in their urine, sudden weight gain, and swelling in various body parts. Prior to the patient’s first admission in March, their caregiver was employed by Door Dash. Due to the rising cost and the three hospitalizations, the caregiver could not keep the job. Given the patient’s age, the caregiver remains bedside to participate in daily medical care/treatment education. Once the patient is discharged from the hospital, they will have outpatient follow up appointments 1-2 times a month until they are in remission. This will be determined by the family checking the presence of protein in the patient’s system. The family lives an hour away from the hospital so there are burdens related to gas/travel. The family only has one vehicle which is unreliable. Currently, the caregiver cannot seek employment outside the home as they have two other children at home and cannot afford summer childcare. This financial request is to help with the electric bill, and rent which will allow the family to stay in their current home. They recently moved into this space when one of the grandparents needed to move in with them. This has placed additional emotional and financial burdens on the family. The caregiver is applying to determine if they will be eligible for SNAP resources as they have limited funds. Therefore, we are submitting for your consideration a request for $239.22 for the electric bill and $400 for rent. Total Ask: $639.22
The committee approved $639.22 to support the cost of rent and electricity.
Case 2: This case involves an eleven-year-old child with End Stage Kidney Disease after a failed transplant. They are on chronic hemodialysis and will remain on dialysis until they receive another transplant. This requires the patient and the caregiver to travel to/ from their home (2.5 hours) three times a week. Each treatment lasts about 3 hours. The family utilizes Medical Transportation which often makes for a long treatment and travel day which at times means getting home after 9p. The caregiver was working a part-time job at a convenience store prior to the start of patient’s dialysis. Once the treatment started, the caregiver’s job could not accommodate the treatment schedule. The caregiver is a single parent with three other children to care for. They tried to work at another business but again could not balance the work needs with the patient treatment needs and other children’s needs, which has increased the present caregiver fatigue. The caregiver is supposed to receive child support but has not been receiving the funds lately. This, along with their unemployment status, has the family in a difficult financial position. They are already appropriately connected with insurance-funded transportation, SNAP, Medicaid and disability for the patient, but caregiver cannot afford childcare at this time as they do not have another option for a caregiver. This financial request will allow the family to maintain their current electric services and avoid a shut off notice. Therefore, we are submitting for your consideration a request for $264.51 towards their electric payment Total Ask: $264.51
The committee approved $264.51 toward the electrical payment
Case 3: This case involves a three-year-old patient with Trisomy 21, g-tube dependence, and a congenital heart diagnosis of Tetralogy of Fallot with a complete AV canal defect. The patient had a surgical procedure (PDA stent with dilation of the stent in 2023 due to cyanosis and severe RVOT obstruction. The g-tube was also placed in 2023. They have been followed regularly in our Cardiology clinic at Children’s and have had some hospitalizations due to respiratory illnesses. Due to the cardiac diagnosis, they are more susceptible to life-threatening complications when ill. In December 2025, the patient was admitted for rhinovirus infection, acute on chronic respiratory failure with hypoxia, pneumonia among other things which kept them in the hospital for several weeks. During that time, they have to be intubated for over a week, which the caregiver had to remain bedside. The other caregiver had to continue working and the patient’s sibling had to stay with extended family while the other caregiver worked. Due to this unexpected hospitalization, the family fell behind on their gas utility bill and were unable to catch up. Their gas company, assisted the family in setting up an average monthly billing plan so the family could make payments to catch up on past charges. To complicate things further, the patient was supposed to undergo a Cardiac Catheterization procedure in April which had to be aborted due to illness. It was rescheduled and completed in June however the patient had a brief code event in required chest compressions for one minute. Patient was able to discharge after observation. During the last hospitalization, the caregiver noted that the family has been struggling financially since the last hospitalization and they need support with ensuring their utilities stay connected. They continue to make efforts to make payments towards the bill, however, they continue to fall behind. This utility is needed to have access to hot water so the family can properly clean and sterilize patient supplies and help prevent the patient from additional respiratory illnesses/infections. Therefore, we are submitting for your consideration a request for $1061.25 for their gas utility bill Total Ask: $1061.25
The committee approved $1061.25 to support the accumulated past gas bills.
Case #4 This case involves an 18-year-old patient with a history of epilepsy with poorly controlled seizures, resulting in five ED visits in the last 6 months. The patient also underwent a major ortho procedure in November. The patient also has cerebral palsy and is developmentally delayed so is reliant on family for all of their care. The caregiver has been unable to work due to the patient’s continuous medical appointments, supervision, seizures and medical needs. The other caregiver also has medical limitations that keep them from getting a higher paying job and is currently working as delivery staff. The patient’s frequent medical needs have also kept them from a stable income. The patient is now 18 years old, and the family is in need of guardianship, they cannot pay out of pocket, and they do not qualify for Medical Legal Aid. The patient is dependent on all cares and activities of daily living. Guardianship will allow caregivers to continue to get SSI benefits and make personal, medical and financial decisions for the patient. Therefore, we are submitting for your consideration a request for $2,000.00 for the legal fees Total Ask: $2,000.00
The committee had a prolonged discussion regarding two issues: does this case met crieria for medical catastrophe, and also the request to support legal fees to obtain guardianship. Several points were made. Why did the family need to receive the SSI support, as the child would certainly continue to receive this? Why does this case not qualify for the hospital Medical- Legal partnership input? Could we have more detail regarding the child’s epilepsy which would assist us in deciding whether this is a medical catastrophe? After this discussion, the committee voted to defer this case and invited Jacob to come back next month with more information.
