Hospital stays will be required for testing, treatment and, if needed, recovery time from infections. Long hospital stays can take their toll on families but there are steps families can take to reduce the stress. From knowing what to expect to making the best use of time in the hospital, families can minimize the effects of daily life in the hospital.
Length of stay
After parents receive a diagnosis of SCID for their baby, they should understand that their stay in the hospital could be a long one, though all cases differ with circumstances.
While the baby is waiting for treatment, some doctors allow the family to go home after just a few days, if the family can start isolation measures at home. Other doctors may keep the baby in isolation at the hospital before treatment is administered.
Factors that may influence whether or not a baby may return home before treatment include:
- Does the baby have an infection?
- Do other young children reside in the home where the baby will live?
Treatment and recovery will require at least roughly two months at the hospital, but could take several months or more. In some cases, doctors do allow patients to spend part of their recovery time at home, if they live within 30 minutes of travel to the hospital. Also, in some cases, if travel time to the hospital takes more than 30 minutes, part of the recovery time may be spent in a temporary home nearby until the doctors approve departure from the area. Hospitals will differ on the residential resources that they offer. For example, some may have residences specifically for families with children who are ill.
The reason for the baby having to be within a 30-minute drive of the hospital is because doctors must:
- monitor recovery through bloodwork and other tests daily, several times a week, or weekly
- address any complications that arise
- be able to treat the baby quickly if there is an emergency
There could also be multiple hospital stays, depending on whether or not the baby develops infections or other health problems.
Isolation measures at either location - at the hospital or in short-term housing - could go on for several months following the treatment. The reason for this is because it could take several months after treatment to ensure that the treatment worked well enough to allow the patient to move further away from the hospital.
Even after being allowed to return home outside of the 30-minute travel time to the hospital, isolation measures may have to continue at the family's house while recovery continues.
Isolation at the Hospital
When a child is diagnosed with SCID, and admitted to the hospital for treatment, the child must be kept in isolation. Isolation is necessary to reduce the spread of germs, and thus reduce the chance of infection. To learn more about isolation procedures at the hospital, click here to go to the treatment section.
Families may also find themselves in emotional isolation because visitors are not allowed in the baby’s room. Only primary caretakers, such as parents, are cleared for entrance into the baby’s room. Visits to the baby from siblings and extended family and friends may be severely restricted because of the risk of germs.
Even so, there are ways that families can make the most of their time in the hospital and do their best to reduce stress and remain calm and rested. Below are some tips for life in the hospital.
- Work out a schedule in which the main caretakers are given a break each day to either go to a different location in the hospital or leave the hospital for a walk, or shopping, or visiting with other family members, especially children. Mental health breaks are essential and should be taken.
- Consider exercising during breaks; go for runs or walks or visit the gym.
- The main caretakers should make sure they get adequate rest and food. Important decisions must be made regarding the child and the caretaker must be ready to understand information and make informed decisions regarding the child’s care.
- Keep a notebook on hand to record the baby’s condition, medical information provided by the doctor, and any questions for the medical staff. Parents may also want to keep a separate daily journal to write down their thoughts and feelings about their experiences.
- Be intentional with time when interacting with the baby. Despite the challenge of SCID, the baby is still undergoing intellectual and physical developmental progress and needs interaction from his or her caregivers. Feed the baby, read the baby stories, provide the baby with tummy time, and give the baby books and toys for play. Interact with the baby as normally as possible to avoid developmental delays in the future.
- Meet with the hospital social worker, or bone marrow transplant coordinator, to discuss topics such as financial assistance, employment issues, temporary housing, discounted travel and other general suggestions for navigating time in the hospital, as well as time after the hospital.
- Use technology to reach out to support groups. SCID Angels for Life offers both information on SCID and support for families living with SCID. Find them at www.scidangelsforlife.com. Speak with other parents who have experienced the same journey and get their advice.
- Meet with the hospital chaplain. Hospital chaplains are trained to speak with people from all religious backgrounds or none at all. Their role is to listen and to respond with comfort to families.