Generation to Generation: Personal Advocacy in Healthcare

 Gemeration to Generation: The Importance of Personal Advocacy in Healthcare -- thebeautywithout.comDear Delightful Daughters,

There is no delicate way to say this: you almost never were.   You are only here because your father and I pushed back against the medical advice of several doctors and advocated for you.

I didn’t come by this naturally.  Until the series of events that led to your conception and birth, I had the utmost trust in the care I received from my doctors.  I had always believed they were experts in all things pertaining to my health and my body.

When our first fertility doctor told us we had less than a 10% chance of getting pregnant and when we failed our first round of IVF, I refused to give up.  I challenged the doctor’s approach and when he refused to explore the experimental treatment I had researched, we looked for someone who would.  The amazing doctors at the UW Medicine Reproductive Clinic  listened to us, contacted the researchers who had demonstrated success with our diagnosis and within six weeks we were pregnant with you two.

When I started getting Braxton Hicks contractions at 23 weeks I chose not to ignore them.  When I spoke to my doctor she assured me they were normal but I insisted that she do an ultrasound anyway.  The ultrasounds revealed that my cervix was funneling and my doctor sent me directly to the hospital for complete bedrest for the remainder of my pregnancy.

When the specialist at the hospital told me I wouldn’t make it through the night because you were pushing on my cervix (and that you had less than 10% chance of surviving the birth), we were desperate for anything that could help.  Your father adjusted my hospital bed to the Trendelenburg position to reduce the pressure, something we had seen on a TV show.  “That won’t work,” the doctors told me.  “You’ll be too uncomfortable,” the nurses said.  After a week in that position and positive progress in my condition, their opinion changed. “Do you think you can stay that way for a few more weeks?,” they asked.  I managed to stay in Trendelenburg for six-and-a-half weeks, increasing your chances of survival by over 90%.

When they removed my IV drugs every few days to wheel me into an ultrasound room I would begin to have contractions as the medication would wear off.  Each time they would wheel me back to the room in a panic.  Your father stepped in and told them it wouldn’t be happening anymore, they would need to bring the ultrasound machine and the tech to my room and my IVs would be staying put in my arm.

When the specialist made a treatment plan that would have left me without the two drugs that were keeping contractions at bay, I questioned her logic.  She had missed the fact that the treatment schedules would overlap and it almost certainly would have put me into labor.  After 10 minutes of discussion she realized the mistake and altered the schedule.

When your final ultrasound showed that Baby L had not grown in 2 weeks (and Baby A had gained a pound!) I insisted that they schedule a C-section.  The on-call doctor assured me that we could wait a few days.  He said he would only be concerned if your cord blood started flowing backwards.  I was all set to call my specialist to override the decision when Baby L took charge and broke her water.  Looks like you learned a few things from your mom.

Now, please don’t take this to mean that doctors cannot be trusted.  All of the doctors and nurses that cared for the three of us made many good decisions in the course of our stay.  The lesson, instead, is that doctors are often making educated guesses.  They have 8+ years of education in their field but they sometimes run across cases that don’t fit the norm.  They need patients to speak up, to tell them what they’re feeling and what they need in order to tailor their care.

Listen to your body and educate yourself.  Your father and I won’t always have control of your medical care, at some point you will need to advocate for your own health.  Do some research before you accept the worst possible outcome.  You are your own best advocate, please take that role seriously.

All my love,

Mom

P.S.  I will pull the “I laid upside down in a bed for 6 weeks for you” card as often as I please for the rest of your lives.

 

This post is part of a series called Generation to Generation (#gen2gen).  The idea for this series was born out of a desire to pass on little nuggets of life advice for future generations.  Not all of these posts will be written by me, in fact I hope to include many more from my family, friends and readers. You don’t need to write to anyone specific, you could write to youth in general.  If you have a little nugget of life advice (serious, inspirational, humorous or elsewise) you’d like to submit, please contact me. 

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