The first step is to find out what is wrong. Sometimes this is obvious and no tests or consultations are needed for a diagnosis, like with babies who have a cleft lip/palate or anal atresia. Other times we are fairly certain but need a specialist to confirm or narrow down the diagnosis, like with babies who have EB or a complex heart defect. And sometimes it is maddeningly difficult to figure out, particularly with babies who have had a previous surgery (usually not successful), brain damage or appear to be simply FTR (failure to thrive). Because our babies come with no previous medical history, pregnancy, delivery or hospital records, everything is a guessing game, and each one needs a special advocate to dialogue with doctors in order to weigh the various options and choose the best plan for treatment.
None of that is easy, but equally difficult is providing the basic care each child needs while they are hospitalized. Because Chinese hospitals do not provide the same basic nursing care that is standard in many other countries, each patient must be accompanied by a family member who will be responsible for changing bed linens, toileting or diapering, washing, feeding etc. The hospital doctors and nurses provide actual medical treatment, but all other aspects of care are left to a family member, who must stay with the patient 24 hours a day. You can see where this is going, right?
Little Ya has been in the hospital for nearly 6 weeks now for surgery to repair bladder exstrophy. Her nanny must find ways to keep this toddler happy and entertained while keeping her pelvis completely immobilized:
Baby Fei is awaiting cardiac surgery. He's already completed a lot of pre-op testing, but surgeons are still consulting on the best surgery plan for him. His nanny's trying to keep him happy while he waits...
Baby Bo was born with esophageal atresia and tracheoesophageal fistula (TEF), and he has experienced many serious complications and undergone multiple surgeries to try and save his life. He is very thin and frail now, but his nanny rocks and comforts him despite his poor prognosis. She knows that her nurturing is very important to his recovery and development. And if he doesn't make it, her love and gentle cuddles will have made all the more difference - a little life otherwise spent in loneliness and despair.
We are so grateful to our dedicated nannies who are willing to go the extra mile and accept hospital duty assignments. You won't see these ladies when you visit the baby home, and they often miss out on parties and other outings that we have for our staff. But please know they are working hard behind the scenes; without their loving commitment we could not possibly achieve the incredible successes that we do. Thank you to all of our hospital duty nannies!
(Nannies for Bo, Fei, Xin and Yi with their little patients at #81 Children's Hospital last week)