Monday, December 15, 2008

My Story (part three)

New to My Story? You might want to start here.

**some names have been changed to protect privacy**

Even though we had made a follow-up appointment at NW Perinatal - I really didn't want to go back there and see that doctor again. Granted, that one nurse seemed warm and understanding, but to pay that doctor for his professional services when he obviously had such a great disrespect for the sanctity of life. And trying to pressure us into an amnio and suggesting termination... No Way - I wasn't going back! Then again, my regular doctor's office had cast me away and told me that I couldn't go back because, now, I was 'high risk' and I couldn't deliver at the Legacy at Meridian Park (as I had wanted). I guess that means that I'd have to search for a new doctor and a new hospital.

I started by calling my friends Cindy and Ward for some ideas. Cindy (bless her sweet soul) is a dear friend that thinks/believes much the same as I do about most things. I like to say that she is an older version of me. I hope she doesn't kick me for that comment because she's not that much older. Ward is an old neighbor of ours (no, he's not actually 'old', he's just from when we lived in Beaumont-Wilshire in NE Portland) and a baby-delivering-family-practice-doctor to boot! He and his lovely wife Sharon are Catholic, so I knew they would understand my pro-life viewpoint.

Cindy suggested that I call the Pregnancy Resource Center (a Christian organization that gives women options other than abortion) to see if they could refer me to a pro-life doctor. I called and while they did have referrals to pro-life OBGYNs, they did not have any pro-life perinatologists (or maternal fetal medicine doctors) on their referral list.

Ward did not believe that he knew any truly pro-life perinatologists, but gave me three names. (The theory is that there aren't any that are pro-life due to the nature of their work. High risk doctors see really weird things that test the limits of what someone would define as 'life'. There are actually some that are pro-life, just not in this part of ultra-liberal Oregon.) Ward told me that these doctors would treat me how I wished to be treated. Dr. Frias and Dr. Pereira were in the high risk clinic connected with OHSU; and Dr. Winkler was at Legacy Emanuel.

(I had also read about the perinatal hospice concept in a couple different online communities, but found that none existed in the whole of the Portland, Oregon metropolitan area - yet)

Since two of the recommended doctors were at OHSU, I started there. I called and transferred to the nurse line. The woman I spoke with (I wish I had written down her name) listened patiently, while I explained that I was pregnant with a baby that most likely had Trisomy 18. I explained that I wanted to find a doctor that respected the pro-life viewpoint and had other patients whom had decided to carry-to-term. The nurse told me that they have had patients that have carried to term before and she asked how I knew that my child had Trisomy 18. I told her of the ultrasound findings and that I wanted to wait to do the amnio until after 28 weeks. I relayed that a friend of mine had referred me to either Dr. Frias or Dr. Pereira. I asked if either had availability (for a new patient) on their schedule. Then she asked (without my bringing up the subject) if I was expecting to get a c-section. I was taken back a bit and answered, "Well, if during delivery, the baby became distressed - then yes, I would want a c-section." She explained that they didn't really do that and it wasn't recommended and she went on and on. But I stopped listening because she helped me decide right then and there that I definitely wasn't going to make an appointment at that clinic. Even if either of these doctors was fabulous - no way was I going to encounter this kind of attitude from a nurse. If I carry this child alive and kicking for nine months - of course I was willing to have a c-section if it meant the difference between meeting my child alive or not!

Next, I called Emanuel and spoke to a nurse. I explained all the same things about: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler. Thank goodness she never brought up anything about a c-section! (I was feeling so frustrated that if she had - I might have started swearing like a sailor) She looked over the schedule and explained that Dr. Winkler was hardly ever at Emanuel and that he was mostly at the Legacy at Salmon Creek (in Vancouver, Washington and almost 23 miles from my house!). She suggested that I make an appointment with Dr. Robertson. So I did.

The next day I talked to Sharon (Ward's wife) and told her about the nurse at OHSU and my appointment with Dr. Robertson. Late that evening Ward called me and said that no way was I to see Dr. Robertson. He'd had other patients of his complain about Dr. Robertson's bedside manner and if I was going to see anyone at that clinic, then it had to be Dr. Winkler. Ward couldn't believe that the nurse at OHSU had asked me such a thing (about whether I was expecting to get a c-section). Ward explained that this wasn't any of that nurse's business or decision, that these types of decisions are only between the doctor and the patient. Ward told me to call Dr. Winkler's nurse, Trish, and make an appointment at the Salmon Creek clinic.

The next day, I called Trish. She is a lovely woman. I explained: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler (only this time I mentioned Ward's name). We made an appointment to see Dr. Winkler. I called and canceled the other appointments (Dr. Robertson and NW Perinatal).

A couple days later, Wendy Busch (a genetic counselor from NW Perinatal) called to give me the AFP results. 1:4,100 chance of trisomy 21 and a 1:4 chance of trisomy 18. She asked if this information changed my mind about doing the amnio. <<Can you believe the pressure this clinic puts on patients to do the amnio right away? I told the doctor that I was pro-life more than three times - didn't they write that in big letters at the very top of my chart?!? Remember, the real reason to do the amnio before 28 weeks was if I was going to terminate - WHICH I WASN'T!>> I immediately bristled and explained that 1) there was no reason to risk that procedure when my baby's lungs aren't yet developed enough for life outside the womb. 2) I might do the amnio when I'm at 32 weeks. 3) I am pro-life 4) Our son is a gift to us and it doesn't matter if we get 2 hours, 2 weeks or 2 months with him.

About two weeks after my appointment at Northwest Perinatal my regular OBGYN called to see how everything went. I explained that in the future, folks at her clinic had better ask a patient if they are pro-life or not. Because if they were pro-life - she had better never send the patient to NW Perinatal. I gave the not-so-detailed explanation about my experience there and that I was set to see a different doctor at the clinic connected with Legacy Salmon Creek. She asked which doctor and when I told her, she said that she knew Dr. Winkler well and that I was in great hands!

Maybe all of this doctor drama / run around would save someone else from having to be subjected to the same treatment at NW Perinatal.


1 comment:

Anonymous said...

Thanks for sharing your story. I can relate to many things you said, even though our stories are different.
I really hated (and still hate) the term "incompatible with life". Dekar's life was totally compatible with mine, no matter how long it lasted.