Tolerance in Preemies
By Rene Milner
My two year old son's favorite thing right now is to get a "boo
boo" and run to mommy for a "kiss" to make it all better.
It always amazes and delights me that this works. When my now 14 year
old preemies were two years old, this seldom happened. As with many other
preemies on the Preemie-Child
mailing list - they had a higher tolerance for the little pains they got
along the way and didn't go running to mom or dad to make it all better.
A few months back we discussed this quite a bit on the mailing list and
below you will find various quotes about the differences in our preemies
in relation to pain tolerance. While not all of them had a higher tolerance
as babies and toddlers, it is interesting to note that many did; and that
those of us with full term children to compare them to seem to feel it
is related in some way to their prematurity.
As Bethe states below, it was helpful to
us all to realize we are not alone in this belief.
"It has been so interesting to read all the responses about pain
tolerance. The best part of this group for me has been reading about
your other preemie's and knowing that mine is not a freak because he's
different from "term" children in little ways that seem not
to bother the pediatrician. Example: tripped. He skinned both of his
palms, they were bleeding and gross looking (must've smarted), and he
didn't cry, got a little upset because he wanted to wash them off and
we weren't near the house, but the boy we were playing with got hysterical
crying. Typical, right?"
Luann stated the same feelings about her son Drew,
"My son Drew (29 weeks, 2lb. 2oz.) is now age 9. As an infant
it seemed as if he were immune to pain. He could fall and bump his head
or get scrapes and bruises and not even miss a beat. The same accidents
would send "normal" kids into hysterics. Family, day-care
providers, or whoever happened to witness this would just be amazed.
I always attributed his high pain tolerance to the fact that he spent
3 months in the NICU and had several more hospitalizations where he
experienced pain regularly. It has been interesting to watch his pain
tolerance level change as he has gotten older. I'm not sure if it is
because he has "learned" that certain things should be painful
and how to react or what, but he now whimpers and cries about every
tiny little bump or scratch. He is always complaining of tummy aches
and "just not feeling good". I sometimes think that this is
just his way of getting attention. Anyway, it has been interesting to
read all the comments related to preemies and pain."
Ina brought up the one thing in her post that I wonder about at
times, when our preemies do begin to show pain, is it really felt, or
a learned reaction from watching others in pain?
"I would definitely agree that Devin's pain level is extremely
high. He is getting better now but I believe it is because he has learnt
that it is "usual" to cry when hurt. When he was younger he
would often hurt himself badly and not even whimper. Gareth on the other
hand is EXTREMELY sensitive to pain and will cry at the drop of a hat.
Gareth though was only in High Care for about a week and had no invasive
procedures done to him.
Devin underwent 5 blood transfusions, heel pricks at least once a day
for 4 months, chest tubes inserted twice with no anesthetic etc."
Lisa agreed with this theory in her post about Megan.
"I have to agree on this subject. Megan did not seem to be bothered
by pain when she was little. Now that she is older she cries when she
gets hurt. I am not convinced it is from pain but rather from seeing
blood. Megan gets allergy shots and is difficult to deal with. Also,
loud noises also bother Megan. Megan was transfused 3-4 times and pricked
numerous times per day for 4 weeks."
Once again, another parent, Lori, mother of Eric, states that her son
only learned that pain was there after being taught that pain was not
necessarily a good thing.
"My son Eric age 4 1/2 (former 27 weeker) still has a high tolerance
to pain. When he was younger he barely reacted to pain at all and only
through "teaching" him that pain is bad did he seem to begin
reacting negatively to it. His hospital stay was 154 days with several
surgeries and many infections."
While many of the parents on the list did state that their preemies seemed
to tolerate pain very well, those with twins noticed some differences
in the two babies. Sue states below that her preemies, Marc and Sara,
not only were different as babies, but have each changed as they grew
"My preemies (both 24 weekers who were born ten months apart)
have different reactions to pain and they change as they get older.
Marc, as a baby, seemed to have a high tolerance for pain, but a very
well-developed startle reflex. As he got older, he tells me about all
his little bumps and bruises (I think it's an attention-getting device--in
place of hugs).
"Sara, as a baby and as an adolescent, always exhibited a high
tolerance for pain. She used to fall down a lot, then spring up, dust
off her hands, and say "no harm done." Where did she get that
"I'm sure all the painful procedures influenced them, but to what
degree? It would be really difficult to quantify because of all the
variables like gender, personality, and the fact that pain is one of
the easiest things to forget when it's no longer being felt."
Here, Sara states one of those "twin things" - that they don't
like seeing each other in pain. Also, it was noted that even though many
preemies had a high pain tolerance for accidental pain, there is great
fear of the pain that is ahead - such as receiving shots, or giving blood.
"Both my kiddos have a very high tolerance for pain - but when
it comes to needles, they both absolutely lose it! I have never seen
a child get as worked up as mine did when they had to be immunized at
their 5 yr. check-up! Granted they were doubly upset seeing their twin
being hurt (I have never taken them to the dr. together and will never
do it again!), but the look of sheer terror in their eyes and the blood
curdling screams were borne of something more than just a kid fearing
a needle. I can't help but think their little brains were brought back
to NICU days. Maybe I'm crazy, but a typical child doesn't react like
that! We saw the same nurse for Ryan's pre-op physical and even she
said in all her years she had never had children react like mine did.
Makes me wonder..."
Here, Teresa explains so well, what many of us felt about the procedures
our little ones went through and how we as parents felt about the pain
they were undergoing.
"I found that both of my somewhat premature daughters, born 6
weeks early, seemed insensitive to pain as infants. I anguished that
they had been damaged irreversibly, in some psychic sense, because they
had suffered through pain while, I imagined, other infants were learning
that the world is filled with stuffed animals, caresses, and trips to
the rocking chair. At the time, the movement to hold your baby immediately
after birth, respond instantly at the sound of their cries, etc. was
in full swing. Yet I had no choice but to stand by while my babies learned
"One of the girls remains fairly insensitive to pain, though not
to the same degree as some of the more premature children mentioned
on this list. The issue with her is her lack of trust in the world.
We were trying out a new church when the girls were about 2 1/2. Against
my overprotective tendencies, I left the girls in the hands of the nice
nursery workers. I returned to find this girl in hysterics. It turned
out that one of the helpers was wearing a white outfit, which looked
somewhat formal, somewhat like a nurse's uniform. All I could get out
of this child was "hurt, hurt, hurt"! It was odd because she
really hadn't been in a hospital except for therapies and evaluations,
since she was 5 1/2 months old. She will take a vaccine more easily
than her sister now, but she seems reluctant to take psychological risks.
It is as though her fears of physical pain have been transformed into
a fear of psychological pain. In kindergarten this year, she remains
largely apart from the other children. When pressed she tells me she
is afraid the children might be mean.
"Her twin is now overly sensitive to physical pain. She builds
up scenarios until she has turned everyday,unpleasant situations, like
immunizations, into crises. I would say she is definitely the more trusting
of the two, though.
These are my only children, and it is quite possible that what I am
seeing can be easily attributed to personality traits, some of them
inborn. But I can't help thinking that their experiences shortly after
birth have been imprinted on their templates. Experience can overwrite
some of the pain, but I believe it will always be there for them."
Michelle had two preemies that were not twins and notes that they too
were different though in their reaction to painful instances.
"Besides their different sexes, my children are like night and
day on EVERYTHING, pain tolerance included.
Samantha: former 27 wkr, hosp 54 days, very routine (no surgeries,
infections, etc). Very high tolerance to pain in a medical setting,
but sounds like she's being tortured if Tanner so much as bats an eye
at her. Very snuggly person (I did modified kangarooing with her while
she was in NICU and "wore" her in a Snugglie for months after
discharge). Love to hug and kiss everyone. Extremely rare for her to
be uncomfortable with someone, even strangers, touching her.
Tanner: former 36 wkr (I was induced b/c of preeclampsia), hosp w/RDS
for 7 days, very routine (no surgeries etc). Low tolerance of pain in
a medical setting (looking in his ear is torture) but very high tolerance
elsewhere (he is always tripping, falling, running into walls; he usually
just gets right back up, laughing). Does NOT like to snuggle unless
he is sick. Has never been very affectionate or enjoy touching. He just
started preschool this Jan, and they are very big on kids comforting
each other; he is now beginning to show a little bit of desire to reach
out to others, but he prefers to not be touched. He never liked to be
touched even as an infant; he hated his Snuggli.
How much of this is preemie-related and how much is simply a personality
difference, I couldn't tell you. I tend to go with the latter in my
case. But this sure is an interesting thread!"
Below is an example of how even as older children some of these preemies
are oblivious to their apparent pain. Cindy
explains an incident that happened when her daughter was 7 years old.
"Our daughter who was 16 weeks premature so probably had at least
450 heel pricks not to mention IVs , an operation for a Broviac and
numerous amounts of tape and monitor patches that would sometimes take
some of her skin off with them when removed no matter how careful the
nurses were and no matter what solutions they used because her skin
was so thin and sensitive and who has been diagnosed autistic seemed
to have a very high pain tolerance for several years,she is now 11,
but it seems to have gone the other way now. When she was very young
she used to "fall" off the bed on purpose and she would laugh
about it .The bed was fairly high so I know it had to have hurt . When
she was about 7 we had an anniversary party for her grandparents in
there home which was newly built. All of their children and grandchildren
were there so the house was pretty full and noisy. She got very excited,
overstimulated and was walking very quickly away from everyone and fell
and hit her head on the baseboard and cut it open we had to rush her
to the hospital she got 9 stitches and never made a sound until they
tried to hold her down. Then she got very upset , before that she seemed
fine and acted like it was all a big adventure."
There are also those that may not show high tolerance for pain while
injured, but they do show a higher tolerance when ill. My own daughter,
Jessie was this way as a younger child if she had a case of Strep. She
would never complain till her fever was so high she had a rash. She even
developed pneumonia once at age 5 and never said a word about the pain
she must have had in her chest.
Janet has noticed the same lack of pain during illness in her sons Clint
"While Clint and Jacob have less pain tolerance than their older
brother during medical procedures, they are more tolerant of illness.
Jacob can have strep throat and 103 degree fever and act as if nothing
is wrong. We have to force him to slow down. We rarely catch ear infections
in the early stages with Clint. He can be laughing and eating fine and
have a severe ear infection. It is usually only after the infection
gets super bad that Clint displays symptoms. By then, the infection
takes forever to resolve. On the other hand, Tyler (full term) calls
me from school every time he gets a little headache. He missed 17 days
last year, mostly due to minor ailments. This year, when he called home
on the second day of school, I took him some Tylenol and made him stay.
This year, he has missed only 2 days."
While this was not a scientific survey of parents of preemies, it was
in interesting discussion for those of us on the list. It was a relief
to most of us to realize that many preemies do exhibit this same high
pain tolerance. It was surely a relief to many to see that most of them
do seem to outgrow this. It is so difficult to always wonder what long
term affect the preemie experience will have on our children - so we all
relish the chance to see how others have progressed.
I will finish with an interesting quote from one of my very soon to be
14 year old preemies. Jessie had eye muscle surgery two weeks ago and
was in a bit of pain for a few days. When I told her she had to make sure
and let me know if she needed something for the pain, her comment was
"I usually just ignore it and don't worry about pain." This
floored me. As many parents of teens can tell you, they DO NOT IGNORE
most pain. They will tell you all about it at most times. Her statement
really made me wonder how much pain they (she and her sister are two surviving
triplets born at 27 weeks) feel at times, but just don't mention because
in their mind pain is still normal? While I myself do not see this as
a major concern any longer, it is still interesting to compare their differences
in regard to pain and illness with their two younger full term siblings.
Copyright 1999, 2002 Rene Milner
Rene Milner is the mom of two 14 year
old preemie daughters, born at 27 weeks, and a 9 year old full term daughter
and a 2 year old full term son.