King Tom's Kingdom

Earlier, at the behest of The Civee, I read a blog entry written by a mother whose daughter was recently denied for a kidney transplant at the Children’s Hospital of Philadelphia.

The story stuck with me in a disturbing way. Not only was the daughter denied because of developmental disabilities, but also because of the general attitude of the doctor and social worker in the story. I’m not the only one who felt this way- a slew of people have blogged about this and commented on the hospital’s Facebook wall, enough to make the hospital put up a special  response to this case. It’s an interesting occurrence- an entity responding publicly to a private matter- and one that is likely to happen more frequently as people air their grievances electronically.

But as a parent, the line in the original story that I keep going back to was something the doctor said: “I have been warned about you. About how involved you and your famliy are…”

I’m surprised that a medical professional (or anyone involved in caring for children) would be amazed that a family would have that type of reaction to bad news. These days, people can educate themselves (with varying degrees of credibility) on medical conditions. And they have the right to ask their medical or care providers for their options.  Parents want what’s best for their child and will be involved as much as they can to make things right.

When The Civee and I found out Hope would be born with a cleft lip and palate, we did a lot of research. One of our doctors told us if we ever read anything online, feel free to ask him to clear up any confusion. Even with that advice, we didn’t always get the answers and guidance we needed. When Hope was born, the staff at the hospital did not know how to handle a cleft baby and we did not get some necessary services or even simple answers to our questions. Because we were in a hospital and first time parents with a newborn, we were overwhelmed. We didn’t know how persistent we needed to be when the head nurse did not visit as promised, when the lactation specialist told us to Google advice on pumping or when the occupational therapist never showed up despite us being told three times that she was on her way.  We were counting on them to care for us and our child. We won’t make that mistake next time.

As for the care she’s received since then, Hope has gotten nothing but excellent care from her cleft team at Columbus’ Nationwide Children’s Hospital. They’ve been responsive and have continued to improve their services.

And the asking questions/being involved as a parent thing doesn’t just apply to medical care. Because of the speech delays that typically accompany a cleft palate, Hope receives services from the county’s early intervention program. Hope goes to a school three days a week where she gets speech, occupational and physical therapy.

Last month, The Civee and I were in a progress meeting with Hope’s teachers, therapists and the center’s director. We are very happy with the care she receives and we let them know that. We also asked a number of questions which were answered and we feel good with their plan. Considering I was the only man in the room and how extremely welcoming they were, I had a feeling that not a lot of fathers show up at these meetings.

Not every parent has the time, skills or knowledge to be as involved with their child’s care as they’d like (and The Civee and I still feel we can do more).  Sometimes it seems the system would prefer parents who were more passive rather than those who bring up the difficult questions.  But those providing care should not be surprised when parents ask questions or simply express their desire to be more involved.