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Pain 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 older.

"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 phrase?

"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 about pain.

"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 and Jacob.

"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.
 

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