Scars of the NICU

Preemie parents discuss the residual scars children born prematurely carry from their time in the NICU.

Compiled by Allison Martin

Some babies manage to make it through the NICU procedures such as IV, PDA ligation, heel pricks, central lines, tape and bandages without lasting scars. However a number of children still have visible scars even as they grow up toward adulthood.

Missing or unusual belly buttons, large scars across the back or stomach, smaller but still visible scars on the feet and neck, and more can be consequences of procedures performed on these small babies. In some cases scarring seems to recede over time. In other cases it becomes more prominent or stretches across large areas as children grow. A small scar on a baby may become be a rather large scar on an older child, depending upon the circumstances. Placement is one of the biggest factors in any concern over scarring when our children grow older. A scar on your child's neck may be visible all the time. A scar on the belly or unusual bellybutton can create problems for swimming season, or with today's fashions for girls when wearing a shirt. Although these scars should not affect the health of your child as they grow into an adult, however they may be something that people want to address in time. Parents may consider plastic surgery for their children as these grow older, especially for very obtrusive scarring.

Below is a summary of the discussion when parents on the Preemie Child mailing list discussed residual scarring.

Sometimes scarring can be very prominent, as Joan D. describes, "Our son has the scars from cut downs after his cardiac arrest, on both wrists. It goes all the way across so he looks like a suicide survivor. Of course those are the the first visible scars. Take off his shirt and you get the Gtube hole and fundo scar, his back has the SDR scar and now his legs will bear the scars from the adductor lengthening. Makes me glad we have an above ground pool away from prying eyes for summer time relief."

A very small event can have a large impact on a preemie's fragile skin. Luckily some scars become less less obtrusive over time, as Katy M. explains, "Our daughter Emily had an spinal tap and they left the little round band-aid on a little too long.When the band aid came off, the area was raw. It looked like a doughnut, because the center section was okay. I was there when it was discovered. I was devastated and so was her primary nurse. At 680 grams, a little band-aid covers a good part of the back. Initially it healed quite quickly. As she grew, the scar grew with her. I still see it, but others don't notice it too much anymore ~ it has faded with time..."

There are several side effects of scars that might not occur to people who do not live with this issue. One is rather light hearted - the appearance of cowlicks in our children's hair lines. Some of the children on our support list have whorls of hair growth or absence of hair growth in areas where IV lines used to be. This can make for slightly unruly hair. Variations in hair due these early experiences in the NICU are fairly common among preemies. Julie H. describes how her son's hair is affected by a NICU procedure, "My son has an ugly spot about a half inch round where an IV "went bad". At the time, it formed a blister. The nurses kept apologizing and I couldn't figure out why. Now I know. He will forever have a raised scarred area where no hair will ever grow. It's right on the part line opposite the huge scar and indentation from where the temporary reservoir was placed before the permanent shunt was installed. No matter where I part his hair, one of these scars shows."

A more serious consequence of scarring in older children is the possibility that these scars might be mistaken for signs of abuse. On occasion parents have found themselves viewed with suspicion by medical and hospital professionals who found multiple scars on their children's bodies. Parents have found that they need to be prepared with a complete medical history when they check in.

Vivian S. recalls a visit to the Emergency Room (ER) made all the more frightening by this problem, "I took my son to the ER) numerous times for RSV and croup. He has some small, yet visible, scars from the various lines that were in his stomach. One of the first times that we were in the ER, the ER Doctor was very, very closely examining his scars - it was very quiet and everyone was watching. Anyway, the Doctor finally (!) asked us, his parents, what happened and I explained his 14 week premature birth, 3 month NICU stay, etc. That seemed to pacify him and he dropped any further investigation."

"A few weeks later saw an item on the nighttime news on how babies who are thought to be abused come into the ER. Topic was how the medical staff is addressing such suspicions of abuse. The Doctor that examined my son was the medical expert that they interviewed on TV... Whew!"

Arla V.'s experience in the emergency room was a revelation, "We took my son in to the emergency room once with difficulty breathing (later diagnosed as RSV). At first the Emergency Room staff actually thought he had cigarette burn scars! Even after we said he got them at the hospital. Finally someone checked his records and said oh yeah he is one of 'OUR babies'."

We also discovered that personality plays a role as well in how well children cope with this visible reminder of their early birth. Some children have developed coping strategies for dealing with the questions of other children. However as they approach teenage years appearance and scars may cause more anguish in their lives.

Sheila B. describes how her daughter copes with her different appearance, "Most of my daughter's girl friends have made comments about the belly button, and a few have come to me to verify the story that doctors really did it to her when she was born. My daughter shrugs off comments with "I was born too soon, had to stay in the hospital and the doctors did it" .... and changes the subject. So her naturally curious friends want to know if it's true that a doctor really did that to a baby... I hope that she keeps the same nonchalant attitude in her teens."

On one level, these scars of prematurity are battle scars and they attest visibly to our children's fight for survival. Scars are a worthwhile trade for the gift of life. However, sometimes scarring can be minimized or avoided altogether if special care is taken during routine handling and various medical procedures of the NICU. Some vary lasting scars come from techniques as simple as band aids and tape. While the physical appearance of preemies when they grow up to be teens and adults seems almost unreal when these little babies are still in the NICU battling for survival, these children will live with their scars for all their days. It is worth taking a moment of extra time to protect their fragile skin in the NICU.

Allison Martin is the mother of a preemie and moderator of the support group, Preemie Child.