MA State Reps Move to Release Justina Pelletier

Representatives Marc Lombardo (R-Billerica) and Jim Lyons (R-Andover) have begun circulating a Resolution of the House of Representatives calling for the Department of Children and Families to begin the process of releasing Justina Pelletier to the custody of her parents.

– Rob Eno, Red Mass Group

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Earlier this week:

Related posts:

Father of Justina Pelletier Speaks Out on Fox News

Justina Pelletier

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Surviving Botulism

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(Continued from Why I’m Such a Lousy Patient)

It started with difficulty breastfeeding. My four-month-old baby didn’t seem to want to eat. What I did not know then was that it had nothing to do with wanting.

I knew from my reading that if a baby stopped feeding, it was time to go to the doctor. The emergency department physician diagnosed him with strep throat and prescribed amoxicillin. Although it didn’t altogether make sense to me that a baby would suddenly stop feeding due to strep throat, I squirted the pink goo into him and hoped for the best. But the best was not to be. He continued to worsen. His muscles became weak. He was losing his ability to hold up his head. Even the easier bottle nipple was too difficult for him.

We went to baby’s doctor who thought the strep diagnosis must be correct. The culture had come up positive. He must be refusing to nurse because of pain. Give him some Pedialyte and wait for the pink goo to work.

Home again. Quickly, baby’s condition became not worrisome, not scary, but terrifying. He was losing muscle tone. He cried non-stop, a weak, high-pitched mew. Frantic, I began to rock him, and then to whip about in a desperate frenzy, holding tight his head which had become like a bowling ball on a rubber band. In my panic, I thought I could rouse him with vigorous motion. Maybe I thought that. I don’t know what I thought.

Soon, I was spoon-feeding milk and Pedialyte into my son. But he seemed to choke on everything that went into his mouth. On our next visit to the doctor, we demanded that our son be admitted to the hospital, and that is finally what happened.

After a couple of bags of IV re-hydration fluid, baby perked up a bit. His color came back and he stopped crying so much. I was optimistic. It was almost over, I thought. But his muscle tone was not returning. Baby still could not eat. He still could not hold up his head. Something was still not right.

The pediatrician took my son away to do a spinal tap. Meningitis maybe? He soon returned to tell me that my son had stopped breathing during the spinal tap and that he had done CPR to restart him. A primal groan issued forth from so deep within me that it seemed to come up from the bowels of the earth, through my feet, and out through my mouth. As I sank into my mothers arms in the deepest grief I had ever experienced, I knew that my son was dying and that nobody knew how to save him.

The pediatrician performed test after grueling test in the ICU as nurses periodically suctioned baby’s airways to keep him from drowning in his own secretions. I was so overwhelmed with grief, shock, and fear that my body began to shut down. The nurses put me to bed with oven-warmed blankets until I felt strong enough to go back to my dying boy.

As I held and rocked my son in my arms once more, he began to choke. He was suffocating! I shouted in a panic at the nurse: “He can’t breath! He can’t breath!”. Several nurses came then, quickly took him from me and began suctioning. Shortly afterwards a life flight from Portland’s Legacy Emmanuel Children’s Hospital arrived with equipment to finally intubate my son so that a respirator could do his breathing for him.

Earlier, our son’s doctor had been in contact with a pediatrician from Legacy. I had spoken to the pediatrician myself and been assured that he was almost certain that he knew what my son had: infant botulism. “But how?” I asked, “He’s never eaten anything but breast milk and a spoonful of baby pears!” The pediatrician explained that infant botulism is not food poisoning. Some babies seem able to grow the botulism spores in their gut as if it were an airless food container. The good news was that baby would most likely get better. But he would be on life support until the toxin worked it’s way out of his system.

My mother accompanied our sick boy and the team of EMTs on the Life Flight to Portland. I had not slept in 5 days and was completely overwhelmed by emotion and exhaustion, so I rode down in the car with my husband. What went through my mind during those three hours on the road? My first thought was this: my son’s life is permanent. Were he to die, he would live again. Second: if he were to die, I would not go home until someone had removed all of his things. Then I fell to beseeching God for guidance and wisdom. In all other ways I was powerless.

When we finally arrived at the hospital in Portland it was midnight, and although I was desperately sleep deprived, we still had to meet with the our son’s new pediatrician. His news was comforting: although test results take weeks to come back, he was sure that our son had botulism and that we had caught it (barely) in time. He would make a full recovery. I was overwhelmed with relief!

All I could think of after that was getting to a place where I could lie down. The hospital provided us with temporary cots in a special “quiet room” reserved for situations such as this. After I found my bed, I lay myself down without my baby next to me for the first time since his birth, closed my eyes, head swimming, and fell into a deep black hole of unconsciousness. When I opened my eyes again, it was time to find my son.

Walking into the glaringly bright ICU for the first time, my eyes were met with the most heartrending scene I had ever seen. My four-month-old mite of a baby was lying on his back covered in wires and tubes. Tears were streaming from the corners of his eyes and his little chest was heaving sobs, but the tube down his throat made sound impossible. I tried very hard to comfort him, but to no avail. He was inaccessible now, tethered to so much equipment that he seemed part machine.  A nurse had tied his arms to the sides of his crib so that he couldn’t pull out his tubes. This felt so wrong, so strange after months of constant contact. I stroked his arms and legs and put my head near him so he could feel my hair. But he was so weak that he could barely lift his arms.  In the weeks following, a little stuffed lion with long hair named by grandma, originally, Mr. Lion, would often substitute for my hair, which baby had always loved to feel.

We decided early on that baby would never be left without a family member right next to him except during the twice daily shift changes when the nurses forced us to leave for an hour. Dad and grandma took turns pulling the night shift and I stayed with him all day. This was to protect my health so that I could keep providing the breast milk that would be given baby through his feeding tube.

At that time, in 1998, the botulinum antitoxin, a medication that can cut recovery time by neutralizing the botulinum toxin, was still in the experimental stages.  If we had decided that we wanted to have access to it, we would have had to transfer to San Francisco, which didn’t seem like a very good option given that the medication would only have shaved maybe a week or two off of recovery time.  We were 3 hours from our home, which allowed for friends and relatives to visit often.  The move would have isolated us.  We made the decision to stay.

My days were completely consumed with caring for baby and alternately finding private places to pump my breast milk every two hours.  I spent hours and hours holding   my baby in the blue reclining rocker next to his ICU crib, he and his tubes and wires propped up with pillows.  The stress of watching my baby suffer through daily blood draws, respiratory therapy, and IV placements was sometimes so overwhelming that I had to leave him with daddy or grandma in the ICU.  What helped was to look at the photo of baby which we had taped to the end of his crib, eyes curious and wide open.  We knew that he would be that sweet silly boy again.  It was just a matter of time.

One day, tests revealed that a potentially dangerous bacteria had taken up residence in baby’s breathing tube, so antibiotics were prescribed.  Unfortunately, the antibiotic chosen was a sulfa drug which baby turned out to be exceedingly allergic to.  He went into anaphylaxis and had to receive breathing treatments.  I don’t think the doctor or nurses ever admitted just how scared they had been that day.

Since infant botulism is exceedingly rare, our pediatrician informed me that he had only a basic understanding of how to bring a baby through it safely. If I wanted to know more, I would need to do some research. Doctor handed me a thick, black binder full of articles on botulism which seemed rather unprecedented to me after so many negative experiences with doctors. Here was a doctor who was more interested in the welfare of his little patient than he was about his ability to appear infallible. I took him at his word and devoured everything in the binder.

Clostridium Botulinum bacteria produce the most toxic substance known to man. Botulinum toxin causes progressive paralysis, beginning with tiredness and muscle weakness, and often progressing to the point where the muscles used to swallow and breath are so weak that the patient dies. The symptoms of infant botulism include constipation, lethargy, weakness, difficulty feeding, and an altered cry, often progressing to the point of respiratory failure and death if prompt medical care is not sought. Because supportive medical care is now available, the case fatality rate for infant botulism has dropped from 50% down to 7% in the past 50 years.

Botulism spores are found in soil and tends to be present in the air in places where the soil has been disturbed such as agricultural regions and constructions zones. It also tends to be present in honey, which is why doctors counsel new parents not to give honey to their infants. In spite of that, however, most infants who contract botulism had never been given any honey. The reason some babies develop botulism while others exposed to the same environmental conditions do not is unknown. My hypothesis at the time was that since my son had had very infrequent bowel movements since shortly after birth, that his septic, stagnant tummy had acted as a perfect breeding ground for the deadly spores.

Botulism tends to cause anemia. Because of that and because we are Jehovah’s Witnesses and do not accept blood transfusions, baby was being given things to build his blood count. One of the blood building medications he was given was erythropoietin. He was also given iron. Because of the reading I had done, I knew that botulism feeds on iron in the gut. I wondered if stopping the iron supplementation might speed his recovery. The doctor had not considered that and immediately ordered that the iron be stopped. It did seem that baby’s recovery progressed more quickly after that.

Some of our nurses thought they were being reassuring by informing me that I needn’t worry too much about my milk supply since they could always mix my milk with formula. Well, I very well would be concerned about my milk supply. I was well aware that baby’s immune system was under a terrible assault and that the last thing he needed was less breast milk. One nurse took my convictions personally and proceeded to angrily defend her use of formula with her own children, trying to convince me that formula would do no harm. That was one of the days that I walked across the street to the Ronald McDonald House where we were staying, completely overwhelmed and in tears. At least the doctor was on my side if the nurse wasn’t.

There was one nurse in particular who was special. I did not like her at first. She wasn’t very friendly and she was very strict about kicking us out during shift changes. But she was good. She knew her business and she was very particular about how it she went about it. She understood that the job of a pediatric ICU nurse is keeping children alive, and she took this very seriously. She did not tolerate mistakes. I think she would have taken all the shifts if it had meant that her charges would be kept safe. And what meant most of all is that she learned to care about our little boy.

My family and I did not come through this ordeal by ourselves. God answered our prayers by giving us “strength beyond what is normal” and by sending us the loving support of our friends. Many made the long trip from home to see us. We also met many friends from the local congregation in Portland who truly proved to be “a strengthening aid”. One family in particular went above and beyond by bringing dinner to share with us in the hospital on several occasions and were very often with us during those difficult days.

Baby gradually began to regain the use of his muscles. After about 3 weeks, he was successfully taken off the respirator. Soon after, he was able to move to the pediatric floor where he had much more freedom. He received physical and occupational therapies to help re-teach him to use his muscles. And here’s the best part: he began to smile again.  True, it was a pale, eyes half mast imitation of his former bright smile, but it was beautiful to see. We used to strap him into his little red therapy chair and put him in a wagon. He loved that, and was often seen being wheeled about with what looked like a sucker hanging out of him mouth (actually a moistening sponge), kicking his little legs in glee at his newfound freedom.

The time was approaching when we would finally be able to go home. Nurses were teaching me how to tube-feed baby, to administer his medications, and to generally be the nurse to a child recovering from a deadly infection. I was overwhelmed and apprehensive. I had so many questions: How long would he have to take the laxative medications? What if he was never able to come off them? Were they doing any harm? Wouldn’t vaccines overstress his system now? Would there be any long-term consequences from all the medications and interventions baby had received? I didn’t get many answers. In fact, I met with anger when I asked them. I found that long-term wellness is not the province of hospitals, and again, I would have to become the expert.

Botulism taught me right at the beginning of my mothering journey not to ever, ever take life for granted; to cherish every moment. You never know which one might be the last. It also taught me  deep gratitude for the technology that saved my son’s life, but at the same time, that taking personal responsibility for our health and the health of our children is not only responsible, it is necessary and life-saving.

Why People Use Drugs

“People use drugs, legal and illegal, because their lives are intolerably painful or dull. They hate their work and find no rest in their leisure. They are estranged from their families and their neighbors. It should tell us something that in healthy societies drug use is celebrative, convivial, and occasional, whereas among us it is lonely, shameful, and addictive. We need drugs, apparently, because we have lost each other.”
― Wendell Berry, The Art of the Commonplace: The Agrarian Essays

Hawk

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Hawk

Soaring above the treetops,

The very image of grace.

Suddenly, sharply, diving, diving,

Legs reaching, feathers flipping,

Talons spread, closing over prey.

This is poem that I wrote when I was twelve years old. I included it in a writing assignment called the “Me Book” written when I was 16. I recently pulled it out to show to my kids and thought it would be fun to post it.

 

Photo By Steve Jurvetson (Flickr) [CC-BY-2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

Why I’m Such a Lousy Patient

 

I do not love thee, Dr. Fell,
The reason why I cannot tell;
But this I know, and know full well,
I do not love thee, Dr. Fell.

— Tom Brown

My first memory of being in a doctor’s office is not a happy one.  It was the day my mother took me in to get my “booster shots” for kindergarten.  I remember being told that I would barely feel it.  “Just a pinch” the nurse said right before I felt a searing hot pain in my sensitive little buttock which immediately caused me to issue forth a shriek of pain and indignation. Thus began a long and difficult relationship between me and my doctors.

Fortunately, my mother was not a worry-wort, so I rarely saw the inside of a doctor’s office after that.  I was in my mid-teens by the time I had another unpleasant medical experience.  I had been feeling so tired and depressed that I was truly frightened for myself.  My mother insisted on taking me in for a blood test in spite of all my vehement protestations.  I was absolutely indignant that I should have to endure what I assumed would be a very painful jab just to find out how I could feel better.

The visit to the doctor was worse than anything I had imagined.  Not only was I required to present my arm for the requisite jab, but I was also sent to radiology for a head x-ray to check for a sinus infection for which I had no symptoms at all (the x-ray was clear).  And worst of all was that the doctor wanted to perform a pelvic exam, which I flatly refused, a pelvic exam seeming like an unthinkably horrid bodily violation to my 15-year-old mind.  The doctor unwillingly relented and instead wrote a prescription for a sulfonamide antibiotic.

After taking two doses of the medication, I began to have probably the most harrowing experience of my childhood up until that time.  My entire body broke out in agonizingly itchy and painful hives.  I began to experience involuntary body movements.  And all I could do was cry.  The worst thing about this was that the antibiotics turned out to be completely unnecessary.  I did not have a bacterial infection.  I had nutrient deficiencies which were quickly and easily taken care of after my grandmother gave me a bottle of liquid vitamins.

My experiences with doctors were not all bad.  Not long after the above mentioned debacle, my parents began seeing a homeopathically trained medical doctor.  It was under her care that my father experienced near-remission from his Chronic Fatigue Syndrome.  It was also under her care that I was prescribed a homeopathic remedy which has been my friend for many years.  At the time, I had been suffering from severe abdominal cramping which prevented me from participating in P.E. at school.  After a ten-day course of Phosphorous 30c, I had no more cramps.  I also felt wonderful and began to gain weight until I was at a normal, healthy 118 lbs.  This happy state of health lasted throughout the remainder of my teen years.

During my first homesick year of marriage my health again took a nosedive.  The terrible abdominal cramps came back even worse than before.  On one occasion it hurt so badly that I became concerned enough to go to the hospital.  After a perfunctory manual abdominal exam, the physician on call basically  sneered at me and accused me of hypochondria.  I felt utterly humiliated.  And I knew he was wrong.

On another occasion, I went to the doctor because I had been experiencing severe shortness of breath.  This doctor happened to be particularly experienced and perceptive and he correctly guessed that I was unable to get a deep breath because I was depressed.  But instead of attempting to help me to get to the bottom of it by referring me to a counselor, he brought out his prescription pad.  I left the office with my first prescription for an antidepressant, which I promptly tossed in the nearest trash receptacle.  I knew why I was unhappy and it had nothing to do with a Prozac deficiency.  I thus postponed for many years my initiation into the nightmare world of psychiatric drugging.  Read about it here

In 1995 I became pregnant for the first time.  I was over the moon!  I had dreamed all my life of having my own child.  In view of what I had already experienced, I knew that I needed to find someone I could trust to take care of me.  I did find that person in a certified nurse-midwife (CNM).  It was the first time since I’d seen the homeopath in my teens that I felt almost comfortable in a medical setting.  My midwife was a very soft-spoken and tender-hearted lady who really listened to her patients.  I found myself not wanting our appointments to end so that I could sit with her and ask endless questions.

My only problem was that I had learned to hate hospitals, and for good reason.  Statistics reveal that hospitals can be very dangerous places.  They tend to harbor some of the most dangerous pathogens known to man, and because of the impersonal, bureaucratic way they are organized, injuries to patients because of medical mistakes are all too common.  In spite knowing all this, I made the decision to have my baby in the hospital simply because I liked my midwife, and she did not perform home births.

The first time I went into labor, I became so nervous that my labor stopped.  The rough initial pelvic exam by a complete stranger did not help matters I’m sure.  I went home feeling defeated and frustrated.  The second time I was admitted, I left sick and in terrible pain, but with a  precious baby in my arms.  I was unbelievably grateful for that healthy little boy, but my hospital experience left psychological scars that would take a long time to heal.  The sense of exposure and violation that I felt during my labor and birth was profound.

Although my midwife was a very compassionate person, she, like all cogs in a great machine, had little control over how I was treated after I entered that machine.  The regular mandatory pelvic exams were humiliating, painful, and unnecessary, leaving me feeling like livestock rather than like a human.  The forced removal of my own clothing, replaced by a skimpy, ugly hospital gown, had the psychological effect of making me feel like hospital property.  I felt under siege the whole time.  Although I had written an official birth-plan, I understood that this birth plan put me at odds with the hospital staff who just wanted me to be good and comply.

As a result, I believe, of the mental and emotional tension created by being in a hospital environment, I had a long, slow, very painful labor and delivery.  During transition, which is the most painful part of labor, I quietly cried through each agonizing contraction as my mother tirelessly put pressure on my aching low back.  I was too cowed to release my pain by vocalizing, which is how I was able to deal with pain during my subsequent home deliveries.

It took 3 1/2 long, horrible hours from the time I was instructed to start pushing until my baby was finally born.  Much of that time was spent in fruitless effort which would have been much better spent moving about until I actually felt a true urge to push.  Right before I was wheeled in to the OR to have a C-section, my husband begged our midwife to let me try just a little longer to have a natural birth.  Her compromise was to start an IV drip of Pitocin to give my tired uterus a kick in the pants.  Shortly after that, my son emerged dark purple, quickly took his first breath, and began screaming his outrage.

Probably because of the long pushing stage, I began to hemorrhage.  This might be why the nurses gave me too much saline solution in my IV, and why I developed water poisoning.  My face blew up like a puffer fish.  I was so weak that I was unable to stand up even to go to the restroom for many hours.

It was extremely important to me that my baby be exclusively breast-fed, much to the consternation of my nurses.  Because they were not allowed to give bottles, they became rather frantic about getting the boy to latch on to my breast.  He just couldn’t seem to do it all the while we were in the hospital.  I resorted to expressing colostrum into a spoon and feeding it to him, drop by drop.  I began to get the sense that what we both needed more than anything was peace.   We needed to go home.  I signed myself out AMA, and off we went with our little bundle in his baby bucket.  As soon as I got into my comfortable, familiar bed, my baby boy nursed for the first time and he never had any more trouble.

Immediately after my son was born, I felt intense joy and gratitude.  I thanked all the nurses with tears in my eyes.  I was in awe at what my body had done, and very proud.  But in the months following, I began to deal with trauma related to some aspects of my hospital experience.  I realized that it had not been at all what I had wished for and expected.  In a way, I felt violated.  I had acquiesced to many procedures which felt invasive to me not because I agreed that they were necessary, but because I felt forced.  I felt that I could not say no.  Even now, 16 years later, it brings tears to my eyes to think of that.

As a young mother, I was still in the thrall of the medical establishment, although my instincts were warning me that our doctor, after all, may not have always known what was best for us.  I remember feeling deeply suspicious of vaccines.  My sister-in-law informed me that I should stay away from vaccine information or I would not want to do it.  That was dismaying to say the least.  But I went ahead and kept all of our “well child” visits.  All my questions about vaccine safety were quickly swept under the rug, which increased my trepidation.

Shortly after receiving his 2 month vaccinations, my baby began to shriek uncontrollably and in a way that I’d never heard before.  I was truly scared.  This went on for quite some time until he finally fell silent, lying limp and white in my arms.  He was conscious, but unresponsive.  Happily, he recovered, although many babies are not so fortunate.

Relatively early on, my son developed severe constipation.  He regularly went 7-8 days without having a bowel movement.  I mentioned this concern to his doctor, who assured me that it was perfectly normal.  So I allowed that state of affairs to continue on unchecked until at 4 months of age my baby became gravely ill.

To be continued…