Motherhood – And Other Adventures

My friend’s two-year-old daughter was scheduled for a kidney transplant last week.  She is a miracle baby who barely survived birth following a placental abruption.  She’s now a sunny toddler with a smile from ear to ear.   

The girl’s last major physical challenge is her kidneys, which only operate at about 25%.  This makes eating and growing difficult.  She has been on dialysis for the last year until she was big enough to receive an adult kidney.  Her father was a good match, and they scheduled the transplant for May.  A large hospital in Philadelphia, two hours from home, was the nearest choice where the surgeons were excellent and the family’s insurance was accepted. 

The transplant was going to be rough.  There were dozens of tests and multiple trips to Philly leading up to the surgery.  The dad’s incision would go from his belly button to the small of his back to harvest the kidney.  He would be unable to work or leave the house for six weeks post-surgery.  Under no circumstances could the girl get sick, so the family kept out of public places prior to the surgery and expected to be completely quarantined for six weeks after the transplant.  After the surgery the girl would need to make the four-hour round trip to Philly twice a week for six weeks, then weekly for six weeks more.  For the rest of her lift she would need to travel there monthly. 

Of course there were risks involved in the surgery.  The girl could reject the kidney.  The girl or father could have a reaction to the anesthesia.  With immunosuppressants pummeling her immune system, any kind of infection could be devastating for the girl.   

Each element of her treatment had potential danger. Nine percent of the participants in the pilot study for the girl’s drugs developed cancer, although the doctors assured her parents that this type of cancer was “very treatable.” 

Despite a thorough understanding of the associated risks, no one expected what actually happened:  the father’s kidney was damaged during removal.  A week later, the doctors are saying that this appears to have been due to human error on the part of the transplant team.   

The first kidney transplant was performed over fifty years ago, in 1954.  16,905 kidney transplants were performed in the US in 2004.  That’s forty-six a day.  There has been plenty of time and opportunity to work out the kinks.  And after all the tests, meetings, preparation, quarantines, and prayers, this specialized transplant team damaged that beautiful, healthy, perfectly-matched kidney.  Unbelievable. 

In part, this is so hard since it was unexpected.  The family was prepared for the worst, but not for this kind of mistake.  And what about the sheer waste of this effort and sacrifice?  The dad has lost his kidney – involving six weeks of recovery where he can’t drive in a car or pick up either of his daughters (they also have a one-year-old)  – for nothing.  Considerably less than nothing, really. 

The family is in a tailspin trying to figure out what to do next.  Can they trust their transplant team?  If not, what are their options, since the next nearest choice would be farther than driving distance.  Should they consider non-related living donors?  Should they go for grandma’s scarred kidney, which was the only other related match? 

The family is absolutely amazing.  The day after the surgery they were already looking forward and trying to come to terms with what they saw as God’s will.  They aren’t focusing on anger, but rather on solutions.  I thank God that they have this faith; I’m not sure how they would cope without it.  To be honest, I can’t believe how well they are coping with it.   

A mutual friend remarked that we only live truly in the moment at two times in our lives:  when we are newly, head over heels in love, and when we are grieving.  We, the family and friends of this precious little girl, experienced that last week.  I could practically hear that community’s gasp when we read the family’s blog the night of the surgery.  It literally took my breath away, and then brought me to tears.   I couldn’t think about anything else for quite a while; I was “in the moment” in the worst way.

We are strangers, many of us, but we are united in support for this family and love for this little girl.  The safety net that we have woven together is incredibly strong and inspiring for all of us.  We grieved together for the bad news of this setback, but now we look forward hopefully to the next step towards recovery.  I hope to have better news very soon.