Huntsville Hospital for Women and Children - Letter sent to Huntsville Hospital Administrative Office concerning preemies eyes not being protected during phototherapy lights to treat jaundice, hyperbilirubinemia at the Neonatal ICU at Huntsville Hospital's Women and Children's Center in Huntsville, Alabama.
Phototherapy used to treat jaundice can cause damage to the nerve layer at the back of the eye, the retina, if the eyes are not properly protected from the light.
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keywords and description: jaundice, neonatal jaundice, newborn jaundice, jaundice in preemies, phototherapy to treat jaundice, eye masks when treating jaundice, eye protection during jaundice treatment, phototherapy treatment, covering the eyes during phototherapy, hyperbilirubinemia, Huntsville Hospital, eyes not being protected during phototherapy, keeping an infants eyes covered during phototherapy to treat jaundice, eye mask, bili light, bilirubin, Natus, neoBLUE, proper eye protection when treating jaundice, retina damage due to phototherapy, retinal eye damage, improper eye protection, improper eye care, retinopathy of prematurity, rop Email sent to the Huntsville Hospital Administration Office in Huntsville, Madison County, Alabama on March 19, 2008 at 4:52 p.m. Central Time Begin Letter ----------------------------------------------------------------------------------------------------------------------------------------- As a Grandmother, I realize that I have to be given limited information about my Grandson while he is in the N.I.C.U. at Huntsville Hospital, but the only question I really had has never been answered properly.
My biggest concern has been and still is:
Preemies eyes not being protected during phototherapy
I am continually reading online about the importance of keeping an infant's eyes covered during phototherapy to treat jaundice.
Even one of the companies that promote the neoBLUE phototherapy lights (Natus) recommends the use of proper eye protection and have masks that when used properly, and are of correct size do not allow light to leak in from under the mask.
My Grandson was born 2 months early, at 32 weeks gestation, weighing 3 lbs. 9 oz. and had quickly dropped to 3 lbs. 5 oz. and had been treated for jaundice for a total of approx. 5 or 6 days.
An eye mask that was obviously too large for him was initially put on, but really did absolutely no good, as it was either totally off, or coming off and completely exposing his eyes.
In the very beginning of the start of the phototherapy EVERY TIME I went to see him his mask was off, or coming off. The same with the child's parents, EVERY TIME. When he was just two and a half days old my son and his wife went to see the baby who was under the phototherapy lights. His eye mask was completely off of his eyes and up on his head. My son apparently did not realize the danger (after all, the baby was in the N.I.C.U.) and took a couple of photos and emailed them to me. I went completely berserk when I saw them.
Each time I went to visit my Grandson I saw a different nurse and questioned her about the eye mask and each time I was told "oh, it's just a precaution", “oh, we just put the mask on so the light doesn't bother his eyes, as long as he keeps his eyes closed it won't hurt him", or "well, the masks are just too large, you can't really expect them to stay on, they never do", etc. etc. One nurse was commenting about people getting on the internet, saying “that’s all people do is scare themselves”. I had more than one nurse tell me that "the babies have never had any problems at all with the bili lights” when I mentioned that his mask is always coming off. How can they say that? Many problems won't even begin to surface for years. I did mention to one nurse that I've read online that it can cause retinal problems and she said that she's "never heard of that". Then it was "well, he may have to wear glasses, but lots of kids wear glasses". That's not the point! If something can be prevented then it should be. And these lights can do much more harm than just cause the children to have to wear glasses. I just cannot understand the complacency of these nurses. These are little human beings, not guinea pigs.
I finally pleaded with the nurse on duty one day to please, at least just walk by now and then to make sure his mask was on and maybe one of the other 6 or 7 nurses sitting at the desk could look in on him as well whenever they were up and about, or hopefully more often then that, as whatever damage that had been done, is done, and all I can hope for now is to prevent anymore. She said she'd make sure of it, but he was taken off the lights very soon after that conversation, so there was no longer any need to follow through with my request.
I even had one nurse that appeared to get upset when we told her that another baby's eyes were totally uncovered the other day. He was in the isolette next to my grandson and I noticed that his eye mask was completely off, no big surprise there. It took awhile to find a nurse (as all but one was in the next room over), but when I saw one walk by my daughter in law told her about the other baby's eye mask. It wasn't that baby's nurse and I don't think she really wanted to be bothered. But she did put his eye mask back on and then totally covered his isolette so that his eye mask could not even be monitored by anyone. Basically, unless his monitors starting going off for too long, he was fine.
Part of the Dr.'s orders included with the phototherapy, also consist of EYE PROTECTION. Although the Dr.'s may presume the nurses are following their instructions that may not necessarily be the case.
It certainly makes one wonder just how much the improper eye care received by some N.I.C.U.'s can greatly affect the outcome of R.O.P. since a very, very large percentage of preemies tend to have R.O.P. and also have to undergo phototherapy.
What kind of training, if any, do these nurses receive regarding the proper care and protection of the baby's eyes while undergoing phototherapy treatment? Maybe retraining is in order?
Have there been any studies done to show what happens when nurses fail to follow preventative eye care measures during the use of phototherapy lights?
I would like to know for how long can a preemie stay under the lights with very little to no eye protection and exactly what kind of retinal damage can happen and when will may show up?
Could you please let me know how much damage could possibly have been done to my grandson's eyes when he had protection less than 50% of the time.
Although for my Grandson, what is done is done, but I would like to bring this to someone’s attention so that other baby’s, parents, and grandparents do not have to go through the same thing.
Thank you for your cooperation and courtesy in this matter.
Donna Ann Fox
Email:
dannfox@comcast.net
P.S.
On another note:
I understand it is very important that a baby’s temperature be monitored during the use of phototherapy and also while being in the warmer.
On numerous occasions when I went to the hospital with my daughter in law to see and care for the baby, she checked his temperature and it was 101.6, 101.5, etc. A couple of times it was when he was under the bili lights. Other times it was from the warmer being set too high and one time apparently the nurse said she swaddled him too tightly. The nurse on duty during those times didn’t seem to think his elevated temperature was of any concern though so we did not get alarmed by this because it wasn’t actually a fever or an infection.
Is it normal for an infants temperature to be
allowed to get so high? ----------------------------------------------------------------------------------------------------------------------------------------- End Letter Thursday, March 20, 2008 5:26 PM - Email received from a Neonatal ICU Nurse Replied back - Thursday, March 20, 2008 8:37 PM - My response back to the email is in red.
----- Original Message -----
Sent: Thursday, March 20, 2008 5:26 PM
Subject: bili mask
Ms. Fox,
I was forwarded the email you sent regarding your concerns about photo-therapy your grandson received. Bili mask are used during phototherapy to protect the infant's eyes. To protect their eyes from what? What kind of damage can the lights cause? I keep asking this question to no avail.
The nurses are to apply the mask to adequately block the transmission of light. Every time I went up there his eyes were exposed do to the mask creeping up to his eyebrows.
The current bili mask that we use do tend to slide off, but this doesn't relieve the nurse from doing everything possible to keep the mask on. The mask that wraps around the head slides off because the hair makes the head slick. It is adjustable. I have photos of two different masks that were used on my grandson, neither of which worked correctly. You are welcome to view them if you'd like:
Complications can occur from the eye mask themselves such as eye irritation, corneal abrasion, blocked tear ducts, and conjunctivitis, so nurses are instructed to do eye care. We do not want the mask to be too tight. The problem was never being too tight, but way too loose and not doing enough to protect his eyes.
If the baby is asleep sometimes the nurses will not disturb the baby to put the mask back on until they wake up since their eyes are closed. Unfortunately when he may have slept (or tried to sleep I should say) for 3 hours at a stretch then that was possibly 3 hours with no eye protection? His eyes may have been closed when I went to visit but I did not see restful, peaceful sleep when his eyes were exposed. Only when we covered them back up did he no longer seem restless.
I can't answer what happened in this particular instance. However, I do know that for some babies it is very difficult to keep their masks on. Obviously that would be when the infants would need to be checked on much more frequently, and by any nurse that happens to walk by, not just his nurse at the time.
I will be more than willing to talk with the parents about any concerns they may have. Also, our neonatologist make rounds every morning they are more than happy to answer any questions they have. My daughter in law told me that she expressed concern to one of the Dr.'s and was told that the lights wouldn't cause any harm.
If they could give me the name of the nurse that did not seem attentive to their baby's needs, that also will be addressed. There was no one nurse in particular, it was each and every one that I/we voiced concern to. Whomever was on duty at the time, as I've stated in my letter. We always have a charge nurse available 24/7 in the neonatal unit. They are available to answer any concerns that arise and can get in touch with me as needed. I absolutely should have spoken with the charge nurse instead of just dealing with his nurse's. I cannot do anything about my Grandson's eyes being exposed now, what is done, is done, but would hope that more care will be taken in the future by the nursing staff with other infants in the N.I.C.U. The eye masks coming off are of great concern and the nurses really need to take this issue very seriously. Is there anyone that can answer these questions that I had also asked in my letter. Have there been any studies done to show what happens when nurses fail to follow preventative eye care measures during the use of phototherapy lights?
I would like to know for how long can a preemie stay under the lights with very little to no eye protection and exactly what kind of retinal damage can happen and when it may show up?
Could you please let me know how much damage could possibly have been done to my grandson's eyes when he had protection less than 50% of the time. Sincerely, Donna Ann Fox
Email:
dannfox@comcast.net
Email received in response to the one above. ----- Original Message -----
To:
Donna Ann
Sent: Thursday, March 20, 2008 10:30 PM
Subject: Re: bili mask
It sounds like your son and his wife need to talk with one of the neonatologist about all of these concerns. Although retinal damage from phototherapy has not been reported, eye covers for newborns are standard prophylaxis. I do take your concerns very seriously and will look into this matter and to sure our nurses are following protocol. Thank you for taking the time to communicate with us. We have every desire to address your concerns about your grandson. Our goal is to provide the best possible care to the babies in our unit. I can set up a time for the parents to meet with one of the physicians; they just need to let me know.
Thank you
UPDATE:
March 21, 2008 - Spoke with two Nurses and one of the Neonatologists at Huntsville Hospital for Women and Children's NICU. The hospital staff continues to tell me that it cannot cause any problems at all and that basically the only reason that it is necessary to put the eye mask on is so that the infant doesn't have the annoying bright light in his eyes and as far as it being a concern whenever the eye mask fell off the Dr. told me that if a nurse had different things going on all at once, that the eye mask would be the last to be dealt with, that it basically "would not even be much of a concern" if a baby's mask was off.
My suggestion was that when the nurses were up and about
that they should walk by the child who is receiving
phototherapy and that any nurse should be able to fix
his/her mask, but again he said that
"it's not really a concern at all".
He reiterated over and over that even though I/we were
concerned that it was not a concern at all and that "there's
never been any harm done".
Obviously that's why my Grandson was never checked to see if his mask was on, it did not matter if the nurses were busy or not, as most of the time when I went to visit and the mask was off they were not busy at all. But then again, if it doesn't really matter to the Dr. then why should it matter to the nurses, his care givers? After that conversation, I can definitely understand their complacency.
There was mention of no studies showing phototherapy
damaging the eyes of newborns. I certainly would hope
there were not any studies like that done, and for very
obvious reasons. There were studies done in mice, rats,
monkeys and pigs, however that show that the lights have
most definitely caused retinal damage in these animals.
The Dr. said they have to weigh what's worse, the jaundice, or the phototherapy. I absolutely do believe in phototherapy treatment, but I also believe there should be mandatory protection and precautionary measures taken during treatment. We don't sit in the room of another person having an x-ray, do we? Women wear heavy lead aprons during x-rays when, or in case they are pregnant, don't they? Those are standard precautionary and protection measures taken during x-rays but precaution and protection is of "no concern" during phototherapy? But then again, this is only a child's eyesight they are being completely lax about which according to them is no big deal. Although there cannot and should not be studies like that done, and again for obvious reasons, that Dr. is 100% convinced that there has never been any eye damage at all done to infants whose eyes were continually being exposed during treatment with phototherapy lights. Wow, I just realized something,
I think that Huntsville's Hospital's NICU may have actually unwittingly
done
I have had several emails from people/organizations telling me that since my Grandson was so close to 32 weeks gestation that his eyes should be okay, I certainly hope so. Although the Dr. never did reassure us that because of his gestational age that he would be okay, he just kept insisting that the eye mask coming off was "really of no concern" and "the lights have never caused any harm to any babies", period even though they DON'T KNOW. But what about the little bitty tiny preemies born before 32 or 31 weeks? What about their masks falling off all the time and their eyes being totally exposed? Of course, any damage that could arise from that will be totally attributed to the fact that he/she is a preemie, and well, that's basically to be expected so why bother to even try to take any type of protectional measures, just in case.
Sep 12, 2008: It looks like after 6 months and a 2nd eye exam we are finally getting some answers. Apparently my grandson cannot focus either up close or far away. SEE UPDATE
EVERYTHING I find online says basically the same thing: covering the eyes of infants undergoing phototherapy is routine, standard prophylaxis and that care must be taken lest the patches slip and leave the eyes uncovered and also the importance of monitoring the baby's temperature which is why I am just so totally confused over the total lack of concern with the neonatal department at that Hospital.
I do realize that the NICU also deals with many emergency and life threatening issues, and since eye mask protection isn't a life threatening issue it cannot be at the top of the list, but shouldn't it at least be ON the list for the times when they're not too busy? When they get through dealing with all of the important issues can't they at least make some time to check and make sure that these babies have proper eye protection as apparently probable eye damage is just not concerning to them at all.
I do believe that was due again, to inadequate eye care at the hospital, as once his mother was able to take care of his eyes herself, they cleared up very quickly.
Gee, I wonder if not having his eyes properly protected could have contributed to or exacerbated it in any way?
The bottom line and my main question
now is:
It makes one wonder
just how many children's
severe eye problems SHOULD
BE linked to improper eye
care
and protection during
phototherapy, yet is only linked
to prematurity?
What's your opinion?
If someone who reads this can help me with some of
the answers I'm looking for, please email me at
dannfox@comcast.net
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This
is the way the baby's eyes looked upon his discharge a MONTH
later.