the Editor: This article is taken from a talk
that the author delivers each year to medical residents
at the hospital in which her son has been a patient
am here to talk to you about my son Patrick who is known
to most people as a cute, kissable, delicious (as described
by one of his nurses), friendly, challenging, and very
the medical and educational communities he is more often
seen as a collection of labels and diagnoses, including:
periventricular leukomalacia, seizure disorder, cerebral
palsy, cortical blindness, cortical deafness and cochlear
damage, asthma/reactive airway disease, gastroesophageal
reflux (repaired), developmentally delayed, multiply
handicapped, and chronically ill/medically fragile.
to the hundreds of doctors, nurses, therapists, teachers
and other professionals who have worked with him, and
to his family, perhaps Patrick's greatest role thus
far in his young life has been that of "Teacher."
has taught us many important lessons. For example, he
has shown us that very little in life can be taken for
granted; that blood tests, x-rays, and brain scans can
be meaningless, and that looking at and listening to
a child is far more valuable. And that you should notnor
is it fair tomake assumptions about any child,
particularly one who is disabled. Patrick
has taught us to always expect the unexpected and to
always be prepared. To most families with young children,
this usually means that you don't leave home without
an extra change of clothes, Cheerios, a juice box, and
extra diapers and wipes for that inevitable and always
badly timed diaper leak. But with Patrick it means never
leaving home without the emergency bag, oxygen tank,
and backup, portable suction, portable nebulizer, pulse
ox, ambubag, bi-pap, feeding pump, Diastat, and at
least a day's worth of medications in the event
you end up in the emergency room and are admitted.
has also taught us about priorities, and how precious
life is, and that a sense of humor is a necessary and
vital survival tool to get you through the crises that
arise. I'll never forget one trip to the ER. Patrick
was pretty sick and did look really bad. But the doctor
assumed he was worse off than he was because he saw
that Patrick couldn't even hold up his head or sit.
I had to point out that even when Patrick is healthy,
he can't hold up his head or sit.
the past three years, with trips to the ER and twenty-three
hospitalizations, we have spent over 300 days in the
hospital. Thus Patrick has had the opportunity to initiate
many new residents, like you!
Patrick is such a magnet for germs, we are doing whatever
we can to avoid being in the hospital. This year, Patrick
has been hospitalized only three times, thanks to a
portacath that was inserted last fall. I am able to
treat Patrick at home myself with IV fluids and antibiotics.
Never did I think when I became a parent that I would
be doing IV's and changing dressings! But I'll do whatever
it takes to avoid another stay at Hotel St. Barnabas.
an educator, I learned early on that my students were
my greatest teachers. No textbook or college professor
could have ever begun to prepare me for the challenges
I encountered in the classroom. Very quickly, my students
taught me how much I didn't know. As doctors,
your greatest teachers will be your patients. And no
one can better teach you that kids are not textbooks
than a child like Patrick. As many doctors have said,
Patrick is writing his own textbook.
has been known to leave teams of doctors both here and
in New York, scratching their heads, totally confused,
and frustrated trying to figure out what is wrong with
him. He has a medical history that would rival any 90
story began long before he was born. I tried very hard
to become a motherI lost six babies (all for different
reasons) and had numerous other problems before I was
able to carry to term our oldest son, Peter, who is
seven and a-half years old. In addition to being a mom,
I am a special education teacher and consultant. I have
worked with babies, children, and young adults with
all types of disabilities for more than 27 years. But
nothing in my past experiences has even come close to
preparing me for my greatest challenge yetthis
little guy, Patrick, who was born fourteen weeks early.
going through all we did to have Peter, we had planned
on him to be our last child. So it was quite a surprise
when I found myself pregnant nineteen months later with
Patrick without even trying and without medical intervention.
My husband still insists it was an immaculate conception!
pregnancy was eventful from the start. Patrick was very
likely a twinthe other egg implanted in the same
tube as a previous ectopic pregnancy. Fortunately, the
egg dissolved on its own, but while watching that, it
was discovered that I had a total placenta previa. We
knew very early that we had another little boy and the
amniocentesis showed he had no apparent problems.
prayed that the placenta would move as the baby grew,
but it didn't. I ran into trouble at nineteen weeks
when we thought I had miscarried yet another baby. As
we raced to the hospital, Patrick started to kick. It
was the greatest feeling in the world to know he was
still with us! But I would have to spend the rest of
the pregnancy in the hospital flat on my back.
goal was to get to the 30th week, at least. We didn't
make it. Early in the 26th week, the placenta gave out
and I hemorrhaged and went into shock. To save me, they
had to deliver Patrick. His heart had stopped beating.
He was not expected to live.
so began the greatest battle of our lives. The night
Patrick was born his lungs collapsed. Three days later
he had a grade IV brain hemorrhage. A week later his
intestines ruptured in 3 places and he was given a slim
chance of surviving the resulting infection and surgery
to repair the ruptures. A month later, after having
a routine PDA ligation, he became profoundly ill and
the doctors told us to baptize him because he was dying.
All of his systems had shut down and he was bloated
many times his size.
Patrick was so fragile and sick, I had never had a chance
to hold him, so I asked if I could. I wanted to hold
him while he was still alive. What a joy it was to finally
hold Patrick! He was only 1 pound 2 ounces at the time.
He was so tiny! The rest of my life I will never forget
that moment. Patrick looked up at me with eyes that
said "Don't worry Mom, I'm here to staydon't give
up." We baptized him with our tears.
surprised them all by surviving the illness that killed
three other babies that weekend. He had been the smallest
and sickest babybut he was the only one that lived.
People from all over the hospital in New York were talking
about Patrick who came back to life with very little
he continued to have major medical problems throughout
the 108 days he was in the hospital. He had four risky
surgeries, more than a hundred x-rays, over 90 blood
and platelet transfusions, numerous blood infections
that nearly killed him and he was on a respirator and
CPAP for 4 months. Many more times we were told he would
die. But he never gave up and we did not either.
left the hospital not knowing what his prognosis would
be as a result of the brain hemorrhage and the other
problems he had had. We were given varying predictions
by the doctors, most of which were very pessimistic.
One doctor even suggested we think about putting him
into a home. But after so many months of wondering if
Patrick would even live, we were thrilled to be able
to finally take him home. Our thoughts were certainly
not on how handicapped he would be.
had a relatively calm year and a half after Patrick
came homeother than the many visits to the pediatrician
for chronic ear infections that persisted in spite of
tubes, and only two trips to the emergency room, he
remained surprisingly healthy. Although Patrick's care
was time and energy-consuming and demanding, we managed
the best we could. We were determined to do whatever
we could to help him.
a special educator, I knew how crucial it is to help
a child like Patrick early in his life. I made sure
he received all the services that were available to
him and we worked with him around the clock. Our efforts
paid off. In spite of his major problems, he exceeded
the expectations of all of his doctors until...three
years ago, when Patrick began a downward spiral that
he is still struggling to climb out of. Many health
problems arose that have set him back quite a bit. It
began with some interactions to drugs commonly used
to treat congestion that caused his seizure disorder
to become active.
after being finally convinced by others to accept some
outside help with Patrick, an inexperienced home health
aide, while feeding him, placed him on his back when
he vomited. Within a few hours, Patrick was struggling
to breathe and I rushed him to the hospital. He had
aspirated and had pneumonia in both lungs. The inhalants
used to treat the pneumonia caused his seizures to go
totally out of control.
month later we were back at the hospital with a diagnosis
of asthma/reactive airway disease which was most likely
a result of the aspiration pneumonia. New seizure and
asthma medications caused Patrick's reflux (which we
didn't even know he had), to become severe enough that
it had to be treated surgically and a G-tube inserted.
More hospitalizations followed for new bouts of pneumonia,
dehydration, two rounds of rotavirus, high fevers and
a seizure that took six hours to control.
years ago, Patrick spent the entire summer in the hospital.
It all began with a severe reaction to a commonly used
medication to thin his secretions, something we were
trying in an effort to avoid a trach and decrease further
bouts of pneumonia. Three days later it was discovered
what was causing Patrick to have pain the cause of which
had baffled the doctors both here and in New York for
many months. Patrick not only had acute hemorrhagic
pancreatitis, but a gall bladder full of stones and
sludge! All at the ripe old age of three years!! The
doctors were stunned!
had his gall bladder and appendix removed. It took three
months for him to recover from the pancreatitis and
get back on his G-tube feeds. More recent hospitalizations
were for various types of pneumonia and atelectasis,
gastroenteritis, seizures, another bout of pancreatitis,
hepatitis, and line infections.
major discovery was made when tests were being done
to find the source of bleeding from his G-tube. An endoscopy
showed what may be the cause of his frequent aspiration
pneumonias. Patrick's surgery to repair his gastroesophageal
reflux included a Nissen Fundoplication. The Nissen
was done to prevent the stomach acids and contents from
entering the esophagus. When Patrick was being scoped,
the doctor found he was unable to get the scope through
the Nissen. So he had to scope him through his G-tube
stoma. If the doctor could not get the very thin scope
through the Nissen, how was food that was given by mouth
or thick mucous or saliva getting through, I asked?
barium swallow X-ray gave us the answer to that important
questiona pouch had formed at the base of the
esophagus where food and/or secretions sat until they
slowly drained through. In the meantime, when the esophagus
contracted, secretions were going back up and Patrick
was very likely aspirating them.
big question, how to fix the problem, is still being
worked on. Those who know Patrick the best, know that
there are never easy solutions to problems and surely
no quick fixes.
message I hope you'll remember the most from this talk
is this: when you are treating children like Patrick
who have many complicated medical issues, it is crucial
that you listen to the parents.
the past, one of the greatest fears we have had is that
doctors who were caring for Patrick would not take the
time to get to know him or to listen to us, his parents.
We worried that they would make assumptions and decisions
based on what's "normal" or typicalor what "the
textbook says" as numerous residents have said to me
regarding concerns I have had about Patrick. I remind
them that Patrick is not a textbook, nor has he read
listening to parents can sometimes have dire consequences.
During one hospitalization, a mistake was made with
Patrick's seizure medication and Patrick received a
quarter of the amount he normally receives for two and
a-half days. His phenobarbital level quickly began to
drop and he began showing behaviors that were certainly
not typical for him.
were very upset that the error had been made, but people
are not perfectmistakes do happen. What frustrated
us the most about the experience is that we knew something
was wrong, very wrong, with Patrick and no one was listening
to us!! He became very agitated, excitable, irritable,
he didn't sleep for more than 24 hours, and he had a
wild look in his eyes. He became more spastic than we
had ever seen and he began having dozens of seizures
much stronger than his usual seizures.
he was vocalizing and so animated, people tried to convince
me that he was just feeling betterthat this was
the new Patrick. Another doctor told me that it is typical
for kids with CP to become more spastic as they get
older. Frankly, that comment scared us half to death!
resident even brought her textbook to show me that Patrick's
behavior was normal for a four-year-old. I wanted to
throw her textbook across the room and yell that the
textbook also says that Patrick should be skipping,
riding a bicycle, and talking in sentences! The majority
of normal kids with normal brains are doing those things,
but Patrick is not normal, nor is his brain! And the
behavior he was showing was not normal for HIM!
Patrick's heart rate, temperature, and blood pressure
began doing some crazy things that made everyone begin
to take notice and listen to us. At my insistence, a
phenobarbital level was done. The level was way down
and when I put two and two together, I realized that
Patrick was not getting the correct dosage of seizure
meds. Patrick was going through withdrawal. He was miserable.
It took more than a week and many seizures later to
get his levels back up.
can't even begin to imagine what that experience felt
like to Patrick. I was scaredI know he was scared.
We both cried a lot that week.
was only one of the many experiences we have had when
we felt we were not being listened to. Another doctor
decided that Patrick was not in much pain because he
was not yelling as loud as he should be. Little did
he know that Patrick's whimper is a normal child's scream.
Nor did he ask those of us who know him the best.
Patrick's disabilities and health issues are many and
complicated; little is ever clear cut with him. In fact,
he is usually the exception to the rulethe 1%.
It is crucial that doctors rely on us, his parents,
to let them know if something is typical or not for
Patrick. Doctors who are not willing to listen to us
or who do not include us in the decision making process
no longer see him.
is on anywhere from 18-20 medications a day. When you
are on that many medications, it is not humanly possible
to know every interaction the meds may have. When I
question doctors about side effects of medications,
and they brush off my concerns, I remind them that Patrick
many times has had rare reactions that no one ever expected.
Patrick's gall stones may have been a rare side effect
of the many months of TPN he had as a preemie. It is
believed that a commonly used seizure medication probably
caused the pancreatitis that could have killed him.
Again, rare, but possible.
have learned that you cannot always rely on x-rays and
other tests to find out what is wrong with Patrick.
What is more important is what he is showing us clinically.
Brain scans show that he should be totally spasticstiff
as a board. But he is not. Before he got sick two and
a-half years ago, he was just learning to use a walker.
is also supposed to be deaf. When doctors repeated his
hearing tests they showed that his hearing had deterioratedthat
he should be profoundly deaf. But we know he is not!
He is imitating sounds, saying words, and following
simple commands. He loves music. He even used to nurse
in beat with the music. He is obviously using a different
part of his brain with which to hear.
out what is wrong, or if something is wrong, is always
a guessing game with him. We know the frustration this
can cause you as doctors because we feel it all the
time, too. We find ourselves hoping that he has an ear
infection, or a pneumonia that shows on an x-ray, just
so we don't have to guess what else might be going on.
we do know that we must act quickly when Patrick shows
us that something is wrong. We have had many, many scary
close calls with him, he can turn bad so quickly. When
caring for Patrick, one must always be on guard and
prepared. We have discovered that the best doctors and
nurses for Patrick are the ones who are afraid of him.
We live in a constant state of anxiety wondering when
the next crisis will arise and whether or not we will
be able to handle it. That fear keeps us ready and prepared
to face what we have to.
don't make assumptions about what children like Patrick
with disabilities can or cannot do based on what you
see at first glance. Because Patrick is slow to respond
and responds so differently, most people, including
professionals, often make the assumption that he can
do very little. Patrick's many illnesses and disabilities
have made it very difficult for him to show us all that
he can do. But if you take the time to get to know him,
he will amaze you with his ability to compensate and
you'll see how hard he tries to do things.
will work for hours to get a rattle to his mouth in
just the right position to chew on it. His arm will
be shaking from the effortbut he keeps trying
until he gets it. Patrick rarely gives up. Because of
his cortical blindness, he is able to see objects and
people best when they are moving. If he is trying to
focus on something that is stationary, he will make
the object or person move by moving his head from side
people are surprised to learn that Patrick has used
switches and other devices since he was a year old with
many different parts of his body, and that he operates
a computer using a switch. He was fortunate to have
been born in an age where technology will allow him
to do things he otherwise would not be able to do.
has been riding a horse since he was 2 years old. Hippotherapy
has worked wonders for him. He sits best and has the
most head control when he is on the horse.
of your greatest challenges in dealing with families
of children with special needs or health issues is knowing
what to say to them and how to say it: how to be optimistic,
yet at the same time realistic, so as to not give false
we knew very early that Patrick would most likely have
some disabilitywe didn't want to believe it. It
took a while for us to accept that Patrick is handicapped.
And we still mourn the loss of our "perfect" child.
But we love Patrick for who he isa charming and
lovable little boyour special gift who has given
true meaning and purpose to our lives. As with most
families with disabled children, getting to the point
we are now was a long and difficult process. Like Patrick,
we had to take things step by step.
decision to get Patrick a gait-trainer and a special
stroller several years ago was agonizing. Getting special
equipment was admitting to ourselves and the world that
Patrick was handicapped. In public, Patrick in a regular
stroller was just another baby. Patrick in his gait-trainer
or special stroller was a statement.
was here at the hospital that I took Patrick for the
first time outside of our home in his special stroller.
It was a big step for me, but I was able to take that
step because I felt so comfortable here among the doctors
and nurses who know us well and have accepted and see
Patrick for who he is, a terrific little boy, and not
many parents of exceptional children, when we were first
told that Patrick would be disabled, our concerns were
for the future. Who would take care of Patrick when
we were no longer able or if something happened to us?
In light of Patrick's many medical issues, our concern
now is whether there will be a future.
like to share with you some final thoughts and suggestions:
children like Patrick, you must be a team player. Patrick
currently sees more than twenty doctors and specialists.
We rely on all of them to cooperate with each other
and together come up with the best plan of care based
on Patrick's needs.
take the time to read his chart and other doctors' notes.
One doctor seemed almost proud when he told me that
he doesn't read other doctors' orders. Patrick's medical
problems are usually interrelated. He never has just
one medical issue going on at a time. When Patrick has
pneumonia, he usually also has seizures and/or GI issues
or vice versa.
gives us more confidence in the medical care Patrick
is receiving than when his doctors gather around his
bed and discuss with us and each other what is going
on and what to do about it. Every one is part of the
plan, including us. Doctors who take the time to consult
with each other are doctors who really care about the
no longer see the doctor who doesn't read other doctors'
so many doctors are involved in Patrick's care, one
problem I have encountered in recent hospitalizations
is miscommunication or inaccuracies in what is being
said to various doctors, particularly the specialists.
The specialists often call to inquire about how Patrick
is doing and they have been given inaccurate or misleading
information. This has become such a problem that the
specialists and I have agreed that if they want an update
or if I have questions, we talk to each other directly.
Be careful that the information you are relaying to
other doctors is updated and accurate.
patient and don't be afraid to say "I don't know." There
are a lot of uncertainties with Patrickhe requires
much detective work and thought. There are many times
when Patrick does not have a clear-cut diagnosis. We
have learned that the best doctors are those who don't
hesitate to say "I don't know." We don't expect any
doctor, especially residents, to have all the answers.
careful about making predictions about a child's future.
Many doctors we have had felt the need to state "definites"
about Patrick even before he had left the hospital after
birth. Some said he would never sit or walk or talk.
We refused to listen to those doctors who felt they
could make such predictions. We stayed with the doctors
who were willing to say that they don't know what the
extent of Patrick's disabilities will be, and instead
said, "We'll have to wait and seePatrick will
"Definites" destroy hope and hope is our greatest asset.
The hope that Patrick would defy the odds and prove
the doctors wrong kept us going and gave us time to
deal with the fact that he was handicapped and begin
to accept it.
doctors feel the need to give worst case scenarios,
which is certainly not helpful or necessary, and very
depressing. We are scared enough of what the future
holds for Patrick, let alone be told what may not happen.
Patrick has taught us to live for the momentto
take life day by day. It's often all that we can handle
to be kind all the time, but especially when giving
bad news. We've been given lots of bad news regarding
Patrick. Bad news is a lot easier to take when it is
given in a kind and thoughtful way with regard for our
Patrick got his G-tube, it took more than nine hours
a day to feed him and give him his meds. I nursed him
until he was three and a-half years old just to make
sure he got enough fluids. Although eating was difficult,
Patrick really enjoyed his food, so it didn't matter
to me how long it took to feed him. When it became clear
that Patrick would need a G-tube, I was devastated.
I felt like I was a failure. Without regard for what
I was feeling, one doctor flippantly remarked "Oh, it
will make your life much easier. All kids like Patrick
end up with G-tubes any way!" She was right about the
G-tube making my life easier, but the way she gave me
the news crushed me.
I talk to other parents whose child will be getting
a G-tube who are upset, I always remember to acknowledge
the disappointment they are feeling that their child
will have to be fed through a tube going into their
stomach perhaps for the rest of their life.
also hate when I am told that "All kids like Patrick
end up needing a G-tube, or a trach, etc. etc." As I
said earlier, it is not fair to any child to make assumptions
about what he or she will need, just because they have
brain damage or CP or whatever.
careful how you label our child. Nothing tore at my
heart more than hearing Patrick referred to as "a failure
are not little adultsand shouldn't be treated
as such. After Patrick had his gall bladder removed,
it was a struggle to get him back on his G-tube feeds.
He couldn't even handle Pedialyte without gagging and
choking. Because there is a great risk that Patrick
will aspirate when he chokes, the doctors who knew him
agreed that he needed to be treated much like a preemie
increasing his fluids a few milliliters at a time.
one surgical resident had other ideas. She obviously
had not read Patrick's chart because she had no clue
what was going on with him, or his history, or why he
was being fed so slowly, when she arrogantly said to
me "You know, when adults have their gall bladder removed,
they are fed the same day!" I was shocked, and for one
of the few times in my life, left speechless. What does
that have to do with Patrick? I should have asked her.
How could she compare what Patrick had been through
the past few weeks, or his whole life for that matter,
with the typical adult patient with gall bladder problems?
Her comment was insulting and I wanted nothing more
to do with her.
often get the sense that residents think that a child's
medical problems stop when it is bedtime. As most parents
quickly learn, nights are usually when illnesses are
at their worst. When a child is in pain, you don't want
to wait until morning to find out what is wrong. Yet
doctors are reluctant to take action during the night.
This has happened many times to Patrick and he has ended
with some pretty serious illnesses that should have
and could have been treated earlier.
are very insistent that whoever touches Patrick either
washes his/her hands or put on gloves. Patrick is very
vulnerable to germs and infections. We'll never forget
when a doctor came in and began to change the dressing
on Patrick's incision. My husband asked him to please
wash his hands. Why? The doctor asked. He is my first
you care for children with special needs, you are not
just dealing with the children but the entire family.
Never assume to know what the family is going through
because you can't, unless you've gone through it yourself.
Families of children with special needs and medical
issues are under an enormous amount of stress. As if
taking care of Patrick is not hard enough, we must also
fight health insurance companies, service agencies and
school districts, etc. etc., to get the services and
support Patrick and we need.
I was a special education teacher for more than twenty
years, I thought I could understand what it must be
like to care for and raise a special child like Patrick
and I freely gave parents advice. Not until I had Patrick,
however, did I learn that I didn't have a clue what
it was like at all. My real education began five and
a-half years ago, when Patrick was born.
the families you see to talk with other families in
similar situations. Our most supportive friends are
other parents of children with special needs. Most of
us are very happy to help another family in the same
boat we are. I belong to several support groups. We
share information and advice. We laugh together, cry
together, and help each other through the hard times.
I could not manage without the support of these parents.
Only they can truly understand what we are going through.
forget the siblings. Their needs are special also. When
Patrick is hospitalized, big brother Peter's first question
is "Who is going to take care of me?" Our entire
family is affected by Patrick's medical problems, especially
Peter. He suffers as much as Patrick. With all the attention
Patrick gets, Peter often feels left out. Doctors who
make the extra effort to pay attention to him get lots
of gold stars. It means the world to him!
have talked openly about Patrick's disabilities and
medical issues with Peter. He knows that Patrick has
brain damage that prevents him from doing things the
way that others do them. And he is quite involved in
helping us figure out ways to help Patrick. A highlight
of every school year for Peter is taking Patrick to
school and telling his classmates all about him. He
is proud to show off Patrick and his special equipment
and answer his friend's questions. He tells them that
he will always take care of Patrickthat Patrick
will live with him because his parents are old!
has seen Patrick surrounded by doctors, rushed into
ambulances and sped off to the hospital, struggling
to breathe, seizing, hooked up to tubes, stuck with
needles. He worries that Patrick will die. It is hard
for us to answer all his questions and address his concerns
because we too are afraid that Patrick will die, and
we don't always know what to say.
are very, very grateful for the many people who have
taken care of Patrick and who have supported us in so
many ways. We are particularly grateful to those very
special doctors, nurses, and therapists who go above
and beyond the call of dutywho take the time to
listen to our concerns and fears, who are there for
us any time of the day, and who offer encouragement
has a terrific team of doctors who care for him. They
have taken the time to really get to know him and our
family. These doctors respect Patrick and us. They never
make us feel like we are bothering them. They are kind
and gentle. They are reassuring. They let us know that
we are not alone in caring for Patrick and handling
whatever comes up. It is only with the support of these
very special doctors that I am able to care for Patrick.
Patrick was in extreme pain, his belly distended, his
skin yellow, and we were frantic with fear, one doctor
spent the entire day and most of the night with us transporting
Patrick himself to and from the radiology department
for x-rays and cat scans. He then made sure that all
of Patrick's doctors were informed of the results and
included in deciding what plan of care to take. All
this on the eve of a holiday! Patrick may not still
be alive nor could we have made it through that day
of Patrick's busiest doctors manage to find the time
to call and ask how Patrick or we are doing, if a new
medication is working, or to give the result of a test.
Nothing is more reassuring than to know a doctor really
cares. Small gestures or words mean a great deal. A
handshake, touch on the shoulder or arm, or a hug mean
so much and give us strength. Such "laying on of hands"
is as therapeutic for us as it is for our Patrick.
wish you luck as you begin this next phase of your medical
training and we look forward to working with you!