Case study of an infant needing complex care

On July 5, 2002, Baby A was born at a term gestation of 38 week by emergency cesarean due to prolonged decelerations. The infant had Apgar scores of 0/0/0 at 1/5/10 minutes, respectively, and a poor score of 4, 20 minutes after birth.

A grim prognosis was given to parents. The baby was put on the ventilator and anti-seizure medication. No gag/suck reflex was initially noted. Diffuse cerebral edema was noted. The baby was having multiple seizures and was on IV Dilantin, Ativan, Phenobarbital.

The Blue Shield of California NICU care manager followed the baby’s course throughout the hospitalization. The case was formally opened to case management in August after the baby was stable and discharge home was anticipated. The case management through June 27, 2003, as coverage with Blue Shield of California terminated effective July 1. However, the mother continued to communicate with the case manager and provide updates on the baby’s progress through October 2003.

Here are the case manager’s progress notes:

• 07/12/02 - Extubated to nasal continuous positive airway pressure.

• 07/13/02 - Weaned to Oxyhood.

• 07/14/02 - Weaned to room air.

• 07/22/02 - EEG noted some improvement. Gavage feeds.

• 07/25/02 - Continues to demonstrate lack of gag reflex.

• 08/01/02 - Attempting to nipple-feed but weak suck/gag.

• 08/06/02 - Trying to consolidate feeds, currently 8 cc over 1 hr. Parents need to be instructed on maintenance/insertion of nasogastric tube before safe discharge. Parents refuse G-tube insertion, and believe that the baby’s outlook is not all gloom and doom that MDs have told them.

• 08/08/02 - Converted to bolus feedings every 3 hr.

• 08/11/02 - Parent teaching complete. Baby discharged home. Parents are very comfortable with gavage feeds. Home Health Care is arranged through Pediatric Services of America.

• 08/16/02 - Called Mom to discuss case management services. Received permission. Reviewed available benefits/ current resources and discussed obtaining authorizing social worker to assist parents with locating local/community/state/federal resources that baby may qualify for to reduce out-of-pocket expenses for family.

Mother states she is unable to work since child is full-time care and sole income is through spouse and that she welcomes any help with finances. The parents agree to care plan. Will follow up for Early Child Intervention/Easter Seals for therapies. The mother is encouraged to look up information on nationally recognized Internet sites to obtain more information regarding daughter’s diagnosis. The mother was encouraged to create a folder with sections and tabs to separate all specialists appointments/claims and explanation of benefits as well as a list of contact numbers for doctors, insurance contacts, home health care, and durable medical equipment providers and community resources. Mother very responsive.

• 08/30/02 - Baby noted to have increased tone and neurological involvement. Collaborating between home health agency/attending physician’s office and social worker to ensure that referrals in place and follow-up appointments for evaluation of program eligibility is completed.

• 11/2002 - Assisted family with obtaining name of pediatric neurologist within 60 miles of family’s home since attending physician was terminating his contract with Blue Shield of California. Advised about continuity of care request for baby. Blue Shield approved services rendered by current neurologist under continuity of care. The physician subsequently renewed his contract with the local blues plan. Therefore, there was no break in the baby’s care. Baby making progress with some developmental milestones, starting to smile. Parents very encouraged. Mother thanking case manager for listening to her insecurities and giving her someone to talk to who understands what they are going through, since outwardly, baby does not appear unusual. Mother looking up information on Internet and seems encouraged.

• 01/10/03 - Unable to obtain follow up with parents, left message about closing of case as goals had been met. Mom called back requesting continued case management because she feels it has helped her to cope much better with baby and 3-year-old son.

• 02/03/03 - Baby making progress in motor skills. Moving legs in meaningful ways, smiles. Acknowledging caregivers. Mother wants to meet case manager on next trip to California to show her the baby’s progress. Baby has made progress with fine motor skills.

• 04/09/03 - Baby is making progress with taking food off a spoon. Communicating with sounds. Starting to have increased balance.

• 05/14/03 - Surgery for placement of G-tube and fundoplication since still not taking enough nutrition by mouth. Diagnosed with cerebral palsy.

• 06/04/03 - Mother thanked case manager again for helping her to gain confidence in her ability to collaborate with treatment team and in her ability to care for baby. Reported that husband had lost his job (subscriber) and family cannot afford COBRA payments. Discussed requesting social worker prior to cancellation of policy to assist with paperwork in obtaining Medicaid. Mother had already contacted a caseworker for Medicaid and made a financial eligibility appointment. She has felt more empowered from interaction with Blue Shield of California case manager. The file book she established at the case manager’s suggestion has allowed her to keep track of all important disciplines for baby. She feels more confident in interaction with doctors. Baby is working with nutritionist as well, provided by Easter Seals.

• 6/27/03 - Case closed as parents have demonstrated ability to independently address the baby’s needs with the care team and various resources.

• 07/01/03 - Coverage canceled.

• 07/29/03 - Call from mother reporting that the family has been approved for Medicaid; baby is making more progress with eating from spoon, smiles on demand. Improving motor skills. Husband still out of work, but she is feeling better about herself and may return to job force and teach spouse to care for baby full time. Thanked case manager for involvement.

• 10/23/03 - Received call and e-mail from mother with new pictures of baby. Mother thanked case manager for having confidence in her. She feels good about her ability to be assertive for benefit of daughter and will start working soon.

Source: A Blue Shield of California care manager with eight years’ clinical NICU experience.