Kidney Doula

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I got an email from our former Nephrologist; former only
because we moved 2000 miles, making appointments rather difficult to keep. (Talk about your traffic woes!) She’s Dr. Niki Becker and is the one in the
picture who is not Chris, Kajsa or me.

Anyway, Dr. Becker went through a ton of really hard times
with us. Although she was not the
nephrologist on call the week that Kajsa was diagnosed, we saw her several
times a week for a much of Kajsa’s first year.

She was the one who let me try to go as long as possible
without a g-tube because I was convinced that I was somehow not trying hard enough,
and if I could simply never sleep again, I might be able to somehow get this
child to actually gain weight. She is
also the one who would often say, “I’m sorry, but you’re going to have to go
across the street to the ER, again.” And
somehow, I didn’t see the connection there. Hmmm…

Well, apparently Dr. Becker has a new set of parents who,
like us are not knee jerk, follow the crowd, parents. Their son (I’m going to call him Ripley,
although that’s not his name) is also under six months and has been diagnosed
with what Dr. Becker referred to in her letter as, “bad luck disease.” I know, I know, no disease is good luck, but
at least with other ones there’s frequently times SOME visual sign that a kid’s
sick. This does often expedite
diagnosis, but also – and perhaps more importantly – obvious illness helps to
keep people from having such strong cases of denial.

And speaking of denial, these parents seem to be having at
least as rough time of it as Chris and I originally did. Evidently, they also have older children who,
much like Maya, were breast-fed, non- immunized, super-natural kids who have
never been sick a day in their lives. It
makes it somehow harder to comprehend, when you’ve spent the past several years
feeling like you’ve done everything right, to suddenly have your whole built up
reality come crashing down around you.

I remember sitting at my sister’s wedding while some woman
told me about how she drank as much wine as she wanted throughout her son’s
gestation. The whole time I was
listening to her ramble on about her Perinatal alcoholism, I sat there holding
my chronically ill, nightly dialyzed, tube-fed infant, thinking, “You
bitch! I went to Bradley classes & birthed
naturally to avoid damaging this kid. I
counted every single gram of protein that went into my mouth to make sure I had
enough. I didn’t have a glass of wine at
Christmas dinner. Heck, I even took long
walks in the cold winter rain.”

So I know about denial. I know about resentment. I know
about wanting to follow the tenants of the all knowing, cloth diapering,
attachment parenting, co-sleeping, breast-feeding bible that is Mothering
Magazine™.

Therefore, when Dr. Becker found that this couple was having
an understandable level of difficulty with their son’s diagnosis, exacerbated
by a general lack of any significant
information to be found on the internet, she automatically thought of good old
yours truly.

What I’ve found out so far is that young Ripley has a bit of
dysplasia, and will be a transplant recipient. But additionally he has a fairly severe case of bladder reflux requiring
actual ureters surgery. All of this is
very scary to hear about your new infant; however, for a pediatric
nephrologist, it is a rather common thing to behold. It presents itself much along the same lines
as all the other cases you’ve ever had of dysplastic kidneys, and responds to a
fairly predictable, albeit exacting and ever fluctuating treatment
schedule. Basically we, as parents and
doctors, become our kid’s super slow motion kidneys. We regularly draw blood to see what we have
too much or little of in the body, and then supplement or inhibit these
hormones, salts, vitamins, etc.

And this would be a shocking, but feasible task for most of
us. But Ripley’s parents are still
trying to work out the issue of immunization. They are reading everything that they can on the internet, and tracking
down court cases, to discover outcomes. They refuse much treatment because they would have to sign a waiver that
absolves the hospital of liability. And
while I do understand the mentality of all of this, it is such small change. This step of the process isn’t even yet a
part of the process, if you know what I mean. As soon, as we found out that Kajsa was more than likely going to
require a transplant at some point, we knew that immunizations were not only
necessary, but suddenly well worth the associated risks.

And I think that may be part of their conflict. Dr. Becker made a point of saying that while
Chris and I resisted her information and
tried very hard to find natural ways to circumvent a variety of treatments, we
ultimately trusted our physicians. We
believed that they were trying to find what they
considered to be the best way to help Kajsa. (Even if we did, in part, believe them to be somewhat brain washed –
pharmaceutical pushers.) 

So now I have been asked to help both Dr. Becker and
Ripley’s parents through this adjustment process. They’ve decided to be seen through MaryBridge Hospital rather than Seattle
Children’s. My hope is that they will
still be interested in some of the support groups offered by the larger Seattle
facility – especially the one’s for siblings. 

I am frankly honored to have been contacted by Dr. Becker,
but have no idea what I’m going to say to this couple. I have no doubt that I’ll figure it out as I
go along, but it’ll still be quite a challenge.

I guess I’ll just start with,
“So, how are you doing?”

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7 thoughts on “Kidney Doula

  1. You are the perfect advocate. Because you know and have lived the non-medical/medical sides of the fence, because you are compassionate–it wasn’t just an honor that you were contacted: you are the best person for this. I am so happy for you and for everyone who will be helped by you!

  2. I had to stick this quotation somewhere so that I’d remember it. This seemed like as good a place as any other.

    Don’t waste yourself in rejection, nor bark against the bad, but chant the beauty of the good.
    Ralph Waldo Emerson

  3. That sounds like a great start to me. I think this family will be very lucky to be in touch with you. What you said really hit home with me – about doing everything right and then still having to go through hell with your baby. Having to accept medical interventions, and knowing it’s not your fault.. I would have such a difficult time with that. You’re a saint.

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