Friday, May 05, 2006

Observation

The nurse asked me to come right away to the NICU. I arrived to find one of our smallest babies in trouble, with formula coming out of his mouth, his heart rate and blood oxygen level both about half of what they should be, and various monitor alarms adding sound effects to a scene of seeming chaos. The nurses were trying to suction his mouth and endotracheal tube - the tube that goes through his mouth into his windpipe and is connected to the ventilator - but not having much success. The mother observed the scene from a few feet away, tears running down her cheeks. One of the nurses asked me if I wanted the mother to leave; I indicated it didn't matter to me.

We ended up removing the endotraheal tube, getting his mouth well suctioned out, and breathing for him briefly with a bag and mask. As soon as we did so, his heart rate and oxygen level improved. By this time, though, mother was sobbing and gasping, and soon thereafter left sounding like she was about to vomit. We then replaced the endotracheal tube and the baby stabilized and did well for the rest of the night. When mother returned, we tried to reassure her that her baby was now doing okay and that what she had witnesssed was a typical scene in an NICU - which is true, but of small comfort to a mother who has to see her baby in such distress, even if it is for a brief time.

I'm not sure how much to let parents observe in the NICU. In general, I'm in favor of them seeing a lot. It's good for them, in many ways, to see us all working together for the benefit of their baby and to have as complete and honest information as possible. I also like them to be at the bedside when we're rounding, so they can hear the plan and understand some of the problems with which we're dealing. But there is a limit. Some procedures parents shouldn't have to see done to their child, not because we're doing bad things, but simply because it's too much trauma for a parent to observe. For instance, when we place an endotracheal tube, we put an instrument called a laryngoscope into the mouth and sort of pry the throat forward, so we can see to place the tube. Although pretty safe in the hands of an experienced person, it looks horrible, and I certainly would have trouble watching that done to my own kids.

A few weeks ago a mother asked me if she could watch me do a spinal tap on her child. I said okay, but that I didn't recommend it, and she ended up taking my advice. I can understand why parents want to be present, and we let them observe us starting IV's and drawing blood. But for some other things, like spinal taps and intubations, I'm not sure it's good. For one thing, a parent observing could make the operator more nervous, lessening the chances of a successful procedure, but mainly, it's just a difficult thing for a parent to have to see.

It's a tough question. Parents have heard about the problems with medical errors and want to avoid them in their kids. But I don't know if watching procedures is the way to do it.

16 Comments:

Blogger Flea said...

In a perfect world, parents wouldn't see this stuff. I am quite sure that this mom was traumatized. For many of the moms in my practice, such experiences leave impressions that color every illness the child ever has for the rest of mom's life.

best,

Flea

12:15 PM  
Blogger Dream Mom said...

I have a weak stomach so I usually don't care to watch. I will not watch certain things-like being intubated and I've never watched a spinal tap, nor have I wanted to. Even more stressful, is when people want to describe a procedure, with all the bloody detail. They don't realize that some people may not have the stomach for it and don't always stop when I ask them. Usually when I am ready to throw up, they get the message.

The most calming thing, is when I see Ped Neuro Doc come in or the airlift team from the same hospital as Ped Neuro Doc. The reason is that I know they know what they are doing and I can relax a bit because I know Dear Son is in good hands.

I am sure you did a fine job.

12:48 PM  
Blogger Awesome Mom said...

I have watched a lot, only leaving when they were having a hard time placing a central line in my son. I think that the wiser parents can tell when their presence would be more harmful. For me the most tramatic procedure that I had to witness was a simple echocardiogram. The technician was freaking out at my son's previously undiagnosed heart defect which was obviously unprofessional of her. It was a long time before I could watch one and even now that procedure is burned into my mind.

1:38 PM  
Blogger Kristina said...

I wouldn't have to watch every procedure but I would absolutely want to be present if my child was going through something as you described- even if it was traumatic for me. The idea of him going through it all without his mother there would make it even worse for me, it would compound the trauma with guilt. I can elect not to watch a certain procedure, but I would want my baby to hear my voice, sense my presence.

2:17 PM  
Blogger Clark Bartram said...

Not that we should practice with visions of lawsuits dancing in our heads but allowing a parent to see what we do during codes leads to fewer lawsuits. This is especially true in adult codes when families can see that a lot of resuscitation was attempted and that the docs didn't just give up without really trying.

4:49 PM  
Blogger Megan said...

The hospital where I did my training has a new focus on family centered care. The phrase itself sounds wonderful, but part of the idea is that the parents be present and in the center of everything. From watching procedures, to being able to email/page resident physicians at any time when they have any questions...I often wonder how it has all turned out. Seemed like a huge time bomb to me.

The whole idea was stemmed from the family advisory board, a well-intentioned group of parents. (most of whom have kids with chronic conditions) However, it just seems that their thoughts all stemmed from emotions and things they were dealing with in terms of their own kids, rather than what would be a good idea for a hospital. And it seemed that the hospital would listen, because this group was emotionally charged and "parental." I sometimes wish I was around to see how it played out.

5:01 PM  
Blogger Dream Mom said...

The rule of thumb I heard fourteen years ago was that the mother should not be present during painful procedures since the infant would associate the pain with their mother. I don't know if it is true or not, but that's what the hospital told me. For the most part, I didn't want to be present for that type of thing anyways.

As far as liability issues, I can understand how physicians would be concerned about that, but most of the errors that I have seen fall into two types: 1) medication errors and 2) lack of training of the hospital personnel which cause a mistake. This is by no means a complete list, I am just mentioning things I have observed.

6:26 PM  
Blogger Awesome Mom said...

I have been there for many painful procedures and I have to poke my son twice a month. He has never associated me with the pain. He is the most forgiving child ever. His peditrican will give him shots and seconds later my son is trying to get on his lap and hug him. I think that line of thinking is not very true.

11:49 PM  
Blogger NeoNurseChic said...

Dream Mom,

I think that's actually pretty sad that they told you children associate pain with their mother if the mother is present during the painful procedure. They would have been better off saying, "We would rather you weren't here during this." I understand what they were trying to accomplish, but at the same time...this is totally not the way I would go about it.

***

I've been taking care of infants when something has gone pretty awry and the parents were there. Usually they step back and out of the way, and sometimes our unit secretary comes in to pull them out for a few minutes. On the whole, I don't mind if parents are at the bedside when I have to do more minor things like placing an NG/OG tube (although this can be rather uncomfortable for parents to watch, depending on the state of the baby...), drawing labs, suctioning, etc. If I have to start an IV, I'd rather not have an audience, myself. It's easier for me to concentrate if I'm focusing solely on the infant and not worrying about anyone else watching. I have had parents stay at the bedside during retaping of the ET tube, but not during intubation. I don't have anything against parents being there for most things if they so choose, but I always give a warning about what is about to happen. I wouldn't describe it in extreme detail, but I do usually say something just to give the parents an idea of what I'm about to do.

And then I think about things in my own life. My mom still tells me about seeing me have a heel stick and an EEG when I was a month old. My parents weren't in the room when I had a spinal tap at age 20, but they have been in the room for a lot of other procedures, if they're allowed. My dad, who is really squeamish, even stayed in the room once for PICC line placement. It always made me feel a little bit calmer knowing they were there! Granted, I wasn't a baby and the procedures weren't massive, but the issue isn't only with respect to infants alone! Part of the reason I always want one of my parents or close friends with me when I have to go to the ER or am in the hospital is because I have some very severe allergies to medications that have almost been overlooked once or twice. I know that if there's a point where I can't say something, at least my parents or friend is there who can!

I'll have to go back and re-read an article on this topic in the American Journal of Nursing because I can't remember what the ultimate recommendations were in that particular article with respect to having family members at the bedside.

Take care!
Carrie :)

12:07 AM  
Anonymous Anonymous said...

My disabled daughter (now 27) used to have severe nocturnal fits. Whilst waiting for the ambulance, I would put my hand on her heaving side and concentrate hard on telling her she was going to be OK in as calm a voice as I could manage. Frankly, it was harrowing - but the worst bit was handing her over to the team at the hospital and waiting to see if they had managed to bring it under control. On another occasion, she stopped breathing after a general aneasthetic and I can remember flattening myself against a wall while what seemed like dozens of doctors tried to get her going again. Don't underestimate a mother's resilience Yes, it's traumatic, and yes, you don't forget the terror - but NOT being there would be far worse.

11:02 AM  
Anonymous Anonymous said...

hello,
me a pediatrician. came up with a new website dedicated to pediatrics. just came across ur blog. nice one. linking to you. do link back.
Dr Sidharth Sethi
Webamster
www.pediatricsinfo.com

7:27 AM  
Blogger neonataldoc said...

Thanks for all the comments. I'm afraid that Flea is correct. Also, I too, like Dream mom, have heard the thing about parents not being present at painful procedures so the kid doesn't associate them with pain. I suspect that's an excuse used to get parents out of the room. And I agree with Clark's idea that there might be some good in families seeing how we struggle with some things.

1:30 PM  
Blogger stockingup99 said...

Scary. I wouldn't let the baby out of my sight in the hospital. How can you exclude parents?

2:56 PM  
Blogger Northwoods Baby said...

I had several surgeries as a child back in the early '70s, and my parents were not allowed to be present, nor were they allowed to see me until I was in the recovery room. I think there is a fine line here. I've had a spinal tap and wouldn't wish it on my worst enemy, but I also wouldn't want to deny the comfort of a parent to a child.

Then again, seeing my child in frightened and pain is not something I want to experience (she said, the day before Son's first series of shots).

Did anyone read the recent article in the New Yorker on having family in the room during a resuscitation?
Surveys of eight relatives (granted, a vanishingly small sample, but better than nothing), who saw a family member die said they were happy they had been there and were not traumatized by the experience. I wonder if if the same might not be the case for parents who see other procedures.

10:56 PM  
Anonymous Janel said...

From a pre and perinatal perspective (www.birthpsychology.com, www.bepe.info, www.beba.org), we know that the baby does better when supported by their parents - no matter what the situation. The experience of NICU is IMPRINTED in the brain – every second is recorded. Who was there, their perceptions and words, their stress, their fears are felt, heard, and recorded by the baby’s brain. Parents who are fully supported and resourced should be there with their children.

There are new understandings of brain development and attachment needs that indicate we ought be supporting parents to be there for their child in every moment. Parents in the NICU will live out these experiences over and over -- because these babies perceive the world is just like it was in NICU. The more parents know about what has happened to their children, the more they will be able to support the child through life.

Of course it's hard to see --- that's why it's the responsibility of the medical establishment to acknowledge the effects of labor, birth, postnatal, like NICU, on the human brain. AND, to begin to support parents in an even deeper way.

This new field of pre and perinatal psychology and birth trauma therapy involves supporting parents to be with their child. It is based on the logic and science that shows us that the brain of the laboring, birthing, and postnatal baby is taking in everything that happens. That's the "BAD NEWS" that our society ignores, because to acknowledge it means we'd have to stop doing much of what we do to babies in labor and birth and beyond. The GOOD NEWS is that there is this new emerging field of prenatal and birth trauma healing based on brain research, cellular biology, and physics since the nineties. We now know that the brain is able to rewire. This is the basis for the infant-parent therapy I do. At any age, one can access the information in the preverbal brain and experience new programming.

I have done therapy with a six year old who was born at 25 weeks, and her mother tested positive for heroin. The mother was in the hospital to prevent premature labor and left AMA and came back in full labor with foot presentation. Birth at 25 weeks was necessary and she spent four months in NICU. The limbic system comes on line in the last trimester, so hers was "programmed" in NICU chaos. Her family life was chaotic. She was the 13th pregnancy, third live birth, and the first girl. The mother desperately wanted a girl. Five years later, the little girl KNEW this -- her prenatal brain was built around it; and it is a contributor to poor attachment with adoptive mother. The child was removed from mother at 18 months and placed with father for a few months and then with a foster family at 2. They finally adopted her at age five. In between the foster family had two biological daughters born at home while going through the parental rights relinquishment process of the state foster care system. The girl’s brain -- like all of us, whose brains are built prenantally through the first year of life, did so by developing amazing survival skills. This little girl reacted to her current environment from the perspective of her early brain imprints. I view all behavior – infant through adult – now as the expression of the early brain experience and development. She was over stimulated, over reactive, fearful of sounds, sirens, and lights. After the finalization of the adoption at age five, her behavior escalated. Her "survival skills" from NICU are maladaptive in the world and her need for chaos and to control, even at age five became worse. Within a year of her legal adoption, her family was in extreme conflict -- unable to have her in the home and unable to let her go, but seeing giving up the adoption placement as best solution for their family. (VERY common).

We worked intensely for four months doing birth trauma healing. This work allows the baby or child's STORY to be heard (every human needs their early experience acknowledged) while allowing opportunity for reprogramming/wiring of new experiences (with new parents) in the brain. I videotape my sessions -- and they are rich with information about how the experiences in NICU are remembered and acted out in the child's behavior. For example, in response to the adoptive mother's question, "How does she know how to push my buttons?" the child showed us (technique and process too detailed to explain here) how in the NICU when she wanted attention she knew how to alter her body systems to get a machine to go off to get care from a staff person. She showed us how sugar is indeed felt as "life and death" to her when her mother was on IV's for premature labor. She initiated resolving the confusion of "bad drugs" (prenatal heroin) and "good drugs" (live saving drugs prenatally and in NICU.)

The process includes healing her early experiences in her brain as well as bringing her into the family system. The adoptive mother went to visit a NICU in order to develop deeper compassion and understanding of her daughter’s experience so that she could truly “be there” with her daughter in her experiencing of the world. She was able to stop reacting to “bad behavior” and stop listening to the advice from traditional counselors that tend to reinforce the child’s fears (i.e., manipulating sweets by using them as reinforcers or punishment severely reinforced the “life and death” need for sweets BECAUSE IV’s made the womb livable. Sugar was like air is to most of us.) Instead of a family constantly in reaction to her (as in the NICU), the parents came together to strengthen their own family nervous system to bring her into their family in a new way. Within six months of contacting lawyers to end the adoption, the family was a new system. Three years later they still have struggles, but they have a new way to interact with their daughter that does not trigger her need to survive negatively.

I imagine that if biological parents knew how to support their baby in the NICU in this new way, that many years of struggles could be avoided. IF NICU hospital staff and parents were aware of the level of life long imprinting happening during every single second and every experience, they could begin to see the value of having intense support for the parents to be present with their child during every procedure and a way to process, discharge, and integrate the experience. That is what I do after the fact -- it would be better to do it in the moment.

As for a discussion of pain, from the prenatal and birth trauma healing perspective, it is HOW parents are there during the pain. The dynamics of the parents in relationship with their child and staff will each be different and unique. A child who associates the mother with the pain could have other earlier prenatal dynamics and imprinting. After all, the only way a gestating, laboring, and birthing baby knows the outer world is through the mother’s thoughts, feelings, perceptions, and hormones. It depends on how the parents feel about the experience. A baby is also effected by how the staff perceive the parents. Staff people talking ABOUT parents while working with the baby when the parents aren’t there are imprinting the baby's brain.

You know how careful we are when we gossip about someone and will say things differently than to their face?? When you work with babies you need to talk as if they understand everything you say, because everything you say and do is being recorded at all times. Literally.

12:03 PM  
Anonymous Anonymous said...

As the mother of 2 preemies, both with severe complications including surgical NEC, it helped me to see procedures being done. Maybe it comes from too many years watching Discovery Health, but if I understood what was being done, I could process it better, and educate myself further about what my children were going through.

-Jennifer

6:34 PM  

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