Parenting Duties

When Eliana was in the NICU and her health was declining, we had a meeting with all of her care providers to discuss dialysis. I remember going into the meeting thinking This is parenting? Sitting around a conference table with a dozen or so medical professionals and deciding whether your baby should go on dialysis? Afterward, we talked with the rabbi as we were making the decision to try dialysis, and when I mentioned how surreal the meeting was he asked, “Well, is it parenting?”

“No!” I said at the time. But now I’ve changed my mind; I think it is. There are some crappy things you have to do as a special needs parent, not least of which is make life or death decisions for your child. But then, there are some crappy things we all need to do.

Some other moms of kidney kids and I were discussing transplant and whether to donate to your child, solicit a live donor, or go on the deceased donor list. There are pros and cons for each. Here are some things to consider: The donor has about a 6-week recovery period, during which time the donor can’t lift anything (or anyone) over 10 pounds. Eliana weighs close to 30 and cannot crawl, pull herself up, stand, or walk yet, so if I donate a kidney, I won’t be able to carry her for 6 weeks.

Often a parent donates a kidney because we share half our genes, and that’s what our doctors encourage.* But children get priority on the deceased donor list, meaning they tend not to wait as long as adults on the list. Because transplanted kidneys usually don’t last a lifetime, some of the parents I know were told to save their own kidney for when their child is older and would wait longer for a deceased donor kidney.

Again, that voice in my head asks Is this parenting? But I have an answer prepared: Yes, it’s what parents do. They hope for the best for their child, even if that’s transplant surgery, followed by a lifetime of immunosuppressant drugs, and maybe needing another kidney at age 20 or 30. Parents have faith in their child’s future no matter what.

*I am going through the workup to see if I am a good match, but Hank is not eligible to donate because of medications he takes for psoriatic arthritis. If you feel called to donate or would like to know more about the process, contact Hank or me or call Hershey Medical Center’s transplant department at 1-800-525-5395 and ask to speak with the Living Donor Coordinator.