Some time ago, Krystin wrote a blog about research studies and asked others to share their own experiences. I’ve had children in two studies, at two different departments of a major university.
The first study involved me and my 11-month-old birth son. The study was on breastfeeding while taking a certain type of medication. It involved one visit. My blood was drawn and the level of medication in my blood measured, and the level of medication in my pumped milk was measured. Then I nursed my baby, who was weighed before and after feeding on scales precise enough to determine how many ounces he’d taken in. Then his blood was drawn and tested for a medication level reading. I was with him the entire time. I felt that although he was too young to consent, other children and parents needed the information and the discomfort of a blood draw was reasonable. (As the researcher prepared to draw his blood, I joked with him in a sing-song voice about “paying his debt to society”.)
If frequent blood draws had been involved I don’t know if I could have gone ahead with it for my son, even though my head said the good of society was worth it.
In this study, we were told we would not be given our individual results, but could ask for the completed study, with aggregate data, in 1-2 years. I assume this is because the researchers did not want to influence people to start or stop treatment on the basis of just a little information.
The other study involved our daughter who had some developmental delays after arriving from Korea at age 8 months. . We learned of the study through a flyer at the Early Intervention center. Regina was 20 months when the study began and 24 months when it ended.
The study compared toddlers who had autism, with those who had developmental delays other than autism, with “typically developing” children. Regina was in the second group, having been diagnosed with delays in speech, motor and cognitive performance. This study was much more extensive, involving ten visits to the university. We were paid $30 per visit. Sometimes the visits were with speech professionals, sometimes with other specialists in various areas. There were standard developmental, behavioral and speech assessment scales. Activities Regina was asked to do were remember which cup the toy had been put under, respond to her name even while engaged in another activity, differentiate familiar faces from strangers’ photos, simple puzzles, etc.
I felt that Regina enjoyed the visits for the most part. Toward the end of the study she was becoming a bit more uncooperative at Early Intervention and I wonder if perhaps we hadn’t overdone it with the intervention sessions and the additional sessions at the university. Could she really not do a peg puzzle, or was she just burned out and refusing to look at another puzzle? It was hard to tell.
There was also an EEG and an MRI. The MRI occasioned the only real concern I had during the study. It is very hard to get a toddler to stay still in an MRI machine for 45 minutes. Therefore, they are usually given complete anesthesia, which I was reluctant to do when there was no medical need for it. Sometimes a nighttime MRI can be tried. They gave us a CD with the sounds of the machine to play for her so she wouldn’t be frightened by them. But we decided that she was not a sound sleeper anyway and it wouldn’t work.
I felt the MRI would be of value to us because we had some concerns about prenatal substance abuse. I allowed a pediatric anesthesiologist to sedate her for the procedure. I was delighted to see that the corpus collosum, a part of the brain often missing or underdeveloped in cases of alcohol exposure, was normal. This doesn’t mean she’ll never have any effects of alcohol use, but it was reassuring that severe abnormalities were not found.
In this study, we were given results of basic tests such as the infant development scales and the speech assessments. I was given these to share, if I wished, with Regina’s doctors and Early Intervention teachers. I also got a copy of the MRI films.
My understanding is that the team had an obligation to share with us any issues they discovered that would be worthy of note on standard medical examinations of the day. That is, they would have to tell me if they found a brain tumor, or that Regina tested lower than the 25th percentile on speech comprehension.
What was not shared were the investigational parts of the study—the hypotheses, precisely because they are hypothetical. For example, if one professor is wondering whether a two-millimeter difference in the corpus collosum length (I’ll quit here before I reveal my ignorance of brain anatomy further) is linked to future reading difficulties, they are not going to tell me that. ( We parents can think up enough reasons to worry all on our own, right?) Maybe someday, if several studies reveal a correlation, it will be information useful in the future.
Research studies are all about the future. Some may give your child access to medical treatment that may help him or her today. Some are totally to benefit others, since the results will not be known for months or years, as was the case with the breastfeeding and medication study my son and I were in. Other studies can provide a bit of both. I still don’t know exactly what they were looking for in the study Regina was in. I did learn where she was in terms of development relative to her age group, learned that she was not autistic (duh), and received a free MRI of her brain.
If you are considering a study for your special-needs child, be sure to read the following blog for questions to ask before you begin.
Should Your Child Participate in a Study?
For another family’s experience, see:
Medical Research: Our Family’s Affair
Giving of Ourselves (Ouch!) for Research
Pam Connell is a Families.com Adoption Blogger. You can read more of her blogs here.