I was invited, two years ago, to write a paper for an academic journal in the social sciences dedicated to providing new voice and creative treatment of health related topics. I was asked, specifically, to work creatively with my voice as the mother of a child with special healthcare needs (CSHCN). My paper, after one mixed review and an ernest attempt at revision was rejected because I was viewed as angry, unreasonable, and naive. I have decided to put it here, clean and pure, in its original form. I am not willing to apologize for my anger, anymore. My anger possibly saved my kid's life and continues, no matter how uncomfortable it is for me, to carve out a good life for my kids.
Dear Midwife,
Despite
me telling you that I felt convinced that something was very wrong with my baby
in my second trimester, you assured me that all mothers feel scared and did not
refer me for any tests. When I told you that the baby was doing something that
kind of felt like twitching thirty times in a row every half an hour you
assured me it was just hiccups. When I told you, after the baby was born, that
I still felt like something was not right with her and that it seemed like it
hurt her when I held her you said that all babies wanted to be held. You threatened
to commit me for severe postpartum depression because I was having delusions
that my baby was sick when she was fine. I felt like a mad woman and questioned
everything about myself until six months later when I finally took my baby to
the emergency room and demanded a CT scan.
The scan revealed that my baby had suffered a massive stroke in the
middle cerebral artery of her brain that had obliterated all of the parietal
and temporal lobes, and most of the frontal and occipital lobes. The
neurologists’ estimate that it happened around the same time I started telling
you something was wrong. I also found out that those hiccups were seizures.
Imagine my shock and devastation when I reflect on my pregnancy and the
horrifying sensation of having my baby seizing in my womb. Finally, it turns
out that I was also right about my baby not wanting me to hold her. You see,
she had so many seizures that any touch was actually painful to her and the
most loving thing I ever did for her, despite hating myself for being a bad,
unloving parent, was to put her in her baby chair instead of holding her. I was
right, you were wrong, but who pays the price?
With an ever broken heart,
Lisa Rossignol
Dear PICU Nurse,
When
you came into my daughter’s room to check her vitals following the surgery to
remove half of her brain, I detected disapproval in your demeanor and tone with
the fact that I was laying on her bed. Perhaps if I tell you some information,
and you were in fact judging me, you might change your mind. First, did you
know that I had not had more than two hours of sleep a night for four months prior
to our meeting? You see, my daughter’s illness and the medication she was on
made it impossible for her to sleep. Also the three hundred seizures a day she
was having meant that she had one every 15 minutes so that even if she were
asleep or postictal, she would still wake crying. Also, did you know that I had
been sleeping in a low back chair for a week and a half? I didn’t discover
until our third week in the PICU that the ledge at the back of my daughter’s
room was lightly padded and I could balance perilously on it if I wanted to
recline. Did you know that I had been too scared to hold my baby for the three
days after her surgery and that on a biological level, I didn’t know she had
survived? She had four IV’s, a central line in her neck, a catheter, a hemo-vac
draining blood just under her scalp and a drain coming out of her brain that
oozed cerebral spinal fluid. I just wanted to be close to her so as I squeezed
into a little ball at the bottom of her big bed-not touching any of the wires
or tubes-I held her little warm hand. Finally, was that your bed? Did you buy
it? Are you the bed police? Do you get paid commission for keeping parents out
of the patients’ beds? I didn’t think so.
Thank you for your consideration,
Lisa Rossignol
Dear Neurosurgeon,
You
are the person that removed the right half of my ten-month-old daughter’s brain
to stop her intractable seizures. I can’t tell you what a life changing
experience it was to have you start our first meeting with an acknowledgement
of my expertise as the parent. I don’t know if you remember what you said or if
it is some type of standard response that you tell all parents but it made me
your lifelong fan. When you said: “Hello, My name is Dr.______ and I have three
children who are all healthy. I can’t imagine what this experience must be like
for you. But, I am going to work hard to get the best outcome for your child.” We
were moved by the fact that one of the top neurosurgeons in the world would
humble himself to acknowledge that no matter how many baby brains he fixes, he
would never know the fear and heartache that dogs our every moment. It was
breathtaking. It is something I try to convey to other physicians in my
research and trainings. After that, my husband and I trusted you at every turn
and were compliant even when what you were asking was tough. Thank you for
showing me the possibilities of patient/family-provider interactions.
With all my gratitude,
Lisa Rossignol
Dear Matthieu:
I
think about you every March 29th because I figured out that was your birthday.
This year you would have been five and I think about your mother and how her
heart must ache. You were in a room next door to my baby in the PICU for
several weeks. When we got there, you were just 5 days old and you had already
had heart surgery. For the first few days I never saw anyone visit you and I
asked a nurse how your family could abandon you. He told me that your parents
wanted to be with you so bad but they were from a neighboring state and your
mother had not been discharged yet. He encouraged me not to judge them. They
were doing the best they could in a really tough situation. No one expected you
to be as sick as you were. I met your mother a few days later and we were both
so hopeful that our babies were going to be okay. When you were 24 days old you
left the unit for your second heart surgery and you came back in a dire condition.
They moved you across the hall from us and we watched, day and night, as your
tiny little body fought in the midst of the incomprehensibly complicated tubes
and wires of the ECMO machine. We watched your uncles and aunts and
grandparents in the hall as they looked through the glass, gasped and sobbed
and we cried at how cruel this all was. I have been changed, forever, by that
brief moment when your mom and I locked eyes and I saw her heart break. You
lived 29 days and then your parents decided to let you go. But, they fought so
hard for you. Happy Birthday, Matthieu. I do all of this work in your memory.
Love,
Lisa Rossignol
Lisa Rossignol
Dear Interdisciplinary Team,
When
I observed your care coordination meeting to acquire data for my thesis, I was
saddened to hear the way you character assassinated the mothers of the children
you were caring for. I sat there in disbelief as all of my worst nightmares
about providers came true. You see, when I was inpatient with my baby, I had
this sensation that every move I made and every action and inaction was being
assessed and judge. I got through that time by convincing myself that I was
just scared and paranoid and tired. After all, it would be inhumane for a group
of people that are supposed to support my child to health to treat me so
poorly. I started this research looking for positive examples of healthcare
providers talking about the families of pediatric patients. My heart broke and
my blood boiled as you launched into hour-long sessions of mother bashing,
neglecting any conversation that could actually benefit the family or child.
You described how one mother was so drugged up and crazy that you wish she
would just go away, while another mother was a know-it-all that wanted to get
in the way of your expertise. I sat there, flooding with adrenalin, using every
faculty I had to keep quiet in the fear that I might destroy my data or get
myself expelled from the meetings and not be able to complete my study. When I
left those days I cried all the way home. I was so disappointed to find that,
in addition to being right about my baby being sick even when physicians didn’t
believe me, I was likely correct in feeling that I was being judged and found
wanting by the healthcare providers around me.
With sadness,
Lisa Rossignol
Dear Resident,
When
you presented your pediatric patient in rounds today I think you got it wrong
about his mother. I couldn’t say anything at the time because I am engaged in a
study and I need the data, free from my influence, for my thesis. You were
presenting about a baby whose mother you were very concerned with. She had
taken the baby to the emergency room; they had done some preliminary tests and
had discharged the baby with a referral for two specialists’ consultation but
both appointments were months away. The mother took the baby home but when the
child started doing the same behavior again, despite starting a medication she
came to the hospital emergency room again and did not want to leave until she
had more answers and could see the specialists. The specialists wanted the
child discharged to teach the mother a lesson that the emergency room was not
an appropriate way to get a specialty consult and she would have to wait like
everyone else. Despite the attending proposing that if the mother felt so
strongly that something was seriously wrong with the child to sit in the ER and
in the hospital for hours and days, then they should trust her, you still sided
with the specialist. I wanted to ask you why? It seemed bizarre to me that you
would take the word of a specialist over your direct attending physician? I
wanted to know how useful would it have been to punish this one woman for a
perceived abuse of the medical system? Who would have found out? How would it
have impacted you? And I wanted to know how you felt about working with “a
mother’s intuition”. The attending had faith that the insight of a mother was a
very important thing to listen to but you just kept insisting.
Scared for your future patients,
Lisa Rossignol
Dear Mother of the Seizing Baby,
While
I was observing team meetings as research for my thesis, one of these meetings
was interrupted by a series of fast high pitch beeps over the intercom. I
wasn’t sure what it was because it sounded similar to the patient call beeps at
the nurses’ station but it was louder and faster. In an instant, all of the
talk stopped, all of the physicians rose, and the room cleared and filled the
hall adjacent to the conference room. By the time I got there, several
physicians were gowned and gloved and were working to provide your four month
old baby oxygen. I wasn’t sure what was happening and then one of the
physicians that knew me whispered “she is having an apneic seizure so she
stopped breathing”. A nurse ran up to the room with a crash cart, which I had
never seen before, right as the baby stopped seizing and slowly started to
breathe. I could see you from behind, standing ten feet away from your baby all
alone, frozen in what I could only imagine was terror. I wanted to go squeeze
your shoulder or hold your hand because I remembered that feeling when I
watched my own baby have an apneic seizure. When that happened I felt like I
almost left my body from the fear that this was going to be the one that was
going to take my baby forever. Or I felt like I wanted to jump from great
heights-not to die-but because only an immense impact could have relieved the
pressure. Her vitals stabilized and all but a few physicians and a nurse stayed
behind. The team I was observing returned to the meeting and continued talking,
as though we didn’t just almost see a baby die. I did my best to swallow my
tears for the longest thirty minutes of my life until the meeting was over and
then I ran to my car and I wept for an hour for you and for me and for all of
the moms. I could not go back to the hospital for a week and when I did return
I remained terrified that I would see and feel something like that again.
Thinking of you,
Lisa Rossignol
Dear Lisa,
I
sometimes wonder if you are a masochist for putting yourself in the position to
hurt over and over again. I think that often times you don’t realize how
painful it will be when you take on these research projects until you are
already committed to them. It has also been said by your classmates that your
research is flawed because it comes from such a “bad, personal place” so you
can’t be objective. I don’t agree. I think your real world experience with
consuming intensive and prolonged medical care with your child, as her agent,
has provided you with the ability to analyze data in ways that a researcher
without children or a researcher with healthy children cannot do. You know what
is at stake; you know how it felt for you to be treated certain ways, that most
of the rest of the world has no concept of. And above all, you have the deepest
love and respect for the rockstar healthcare providers that went above and
beyond to provide you with respectful care, unbiased information, and a place
at the table for your daughter’s care planning. Please don’t be afraid to do
this work that you love so much.
Yours truly,
Lisa Rossignol
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