Parents may or may not have options when it comes to choosing a transplant center to perform hematopoietic stem cell transplant, or HSCT, for their baby with SCID. Sometimes insurance requires families to use certain specialists or certain facilities. Under other insurances, families can research facilities and doctors and choose what they think is best. Regardless, parents should ask key questions of the transplantation specialists.
Points parents should keep in mind as they evaluate transplantation include, the length of time the center has provided hematopoietic stem cell transplants; the number of hematopoietic stem cell transplants the center has performed on persons with SCID; and the number of hematopoietic stem cell transplant specialists on staff.
Two resources parents can use to find transplant specialists include the Primary Immune Deficiency Treatment Consortium (PIDTC), which can be found at http://pidtc.org, and The National Marrow Donor Program, which can be found at https://bethematch.org/.
Here is a list of questions to ask a healthcare team before choosing them to perform the HSCT.
- How many cases of SCID has the hospital treated with HSCT?
- How many years has the hospital used HSCT to treat children with SCID?
- How many HSCT doctors are on staff?
- How much conditioning will be required before the HSCT?
- Which doctor or group of doctors will be in charge of the child's care after discharge?
Parents and caregivers of children with SCID should learn as much as they can about the HSCT procedure before it occurs. The following questions can be used to both educate caregivers and evaluate the hospital's experience with SCID.
- What precautions should be taken prior to admission for transplant?
- How long will the child with SCID be in isolation?
- What isolation precautions are required before, during, and after transplant?
- What are the responsibilities of the caregiver to keep isolation precautions in place?
- What are the isolation guidelines and expectations of members of the medical team, and visitors when entering the child’s hospital room?
- Describe the complications related to a child with SCID undergoing HSCT.
- If things go well during transplant, what is the average amount of time in the hospital and recovery time?
- What is expected of a primary caregiver while the child with SCID is in the hospital and after the child goes home?
- Which doctor or group of doctors will be in charge of the child’s care after discharge?
- Can my child receive live vaccines after the HSCT?