Table 2:
Parent Quotes Stratified by Meeting or Not Meeting Expectations
| Expectations Met |
| “I assumed that my child would struggle with illness through his first couple of years outside of isolation… especially for the first few years in preschool. However, overall, my son has been the healthiest of my three children.” |
| “Meeting our son today, you would never know that our son had any medical treatment, let alone a BMT[*] as a baby.” |
| “He is engrafting very well, no hospitalizations since the first couple of weeks after transplant, no infections other than C. diff., no fevers or colds. Overall, he is doing very well!” |
| “He’s done very well for 23 years. It was not until recently that his numbers have started to decline. This was always a possibility in the back of my mind.” |
| “My first expectations were based off outcomes prior to the newborn screening. Since my son was treated before illness, he has done better than I initially expected.” |
| “He was the 13th person in our family to have the disorder but the first to live past the age of two. We were all pleasantly surprised.” |
| Expectations Not Met |
| “I really just remember praying he would survive. But once he was through the transplant, I was expecting him not to need IVIG[**] and that was not the case.” |
| “His BMT was successful, however, he developed complications thought to be from cytoxin, liver engorged, ascites, which lead on to multisystem failure in ICU.” |
| “Our little one has normal counts of B-cells so we assumed he wouldn’t need SCIG[***], now we are finding out it is because all those B-cells are his and don’t function properly because of the SCID, that he will need IgG replacement for life.” |
| “Our son has been diagnosed with a chronic lung disease that we believe is a result of the chemo he received. He was diagnosed 12 years post-transplant, so it was completely unexpected.” |
| “Other medical problems arising from the transplant caused developmental delay which was unexpected.” |
| “His health is better than it was prior to transplant; so, in that sense it is better than expected. However, as the years go on a few new things pop-up which is worse than expected from the years before.” |
*
Bone marrow transplant, HCT
**
Intravenous immunoglobulin infusions
***
Subcutaneous immunoglobulin infusions