Friday, October 20, 2006

Concerns

The baby was floppy and not crying when he was brought to the infant warmer table immediately after delivery. Because he had meconium staining - he'd had a bowel movement in utero into the fluid around him - we first suctioned his windpipe. After that he was still depressed and not breathing (no surprise there) so I began giving him artificial respirations by putting a mask on his face and squeezing a bag to blow air into his lungs. He began breathing by himself after that but not very well. I ended up intubating him - putting a breathing tube into his windpipe - so we could more effectively breathe for him. He perked up after that and we brought him to the NICU and connected him to a ventilator.

Before we left the delivery room we showed him to mom and I told her that we were helping him to breathe and so on. After I said this, Mom's only question was, "You mean he won't be able to come to my room with me?"

This happens quite frequently. We tell a parent about a serious health problem in their baby and they seem only concerned with a more minor thing, like being separated from the baby for a few hours or so. I really try to give the parents the benefit of the doubt on this; I know they don't always understand what's going on, and even if they do they don't always know what to say or ask. I know it's important for parents to have their baby with them. But still, the difference in gravity between a person not being able to breathe versus not coming to your room is so great you'd think they would understand it.

I try to put myself in their position, to try to understand it better, but if someone came and told me "Your daughter is having trouble breathing and is on a ventilator," I don't think my first response would be "You mean she can't go to the football game with me tomorrow?" Not all parents are like this, of course. Others are the opposite, getting extremely worried even if you tell them about a very minor problem. It's hard to predict a given parent's response.

Later the same day the baby improved, came off the ventilator, and looked like a normal, pink, breathing baby. When I went to the mother's room to give her the good news she had only one question: "Will he be able to come home with me in two days?" Sigh.

37 Comments:

Blogger Laura said...

so many times it is all i can do to not start giggling or offer a snappy comeback when a family asks such questions of their critically ill baby. my favorite is when a daddy asks if we will cicumcise his 24 week gestation son who is fighting for his life.
perspective, laura, perspective....
20 years ago in December i asked similar questions regarding my first born who was born with particulate meconium. I make this my mantra when parents ask such questions.

1:37 PM  
Blogger Kelly said...

My suggestion to you would be this:

Read into the question.

Granted, some of the parents you may deal with do NOT have the mental capacity to comprehend the severity of the situation. Yet, there are some that may use these "lighter" questions to get to the "rougher" situation. And when they ask such an unmerited question, simply respond with an equally trivial answer, "No."

I really think that perhaps this is where the parent (if they have any intelligence), comes to terms with the problem and may ask the more in-depth questions that they SHOULD be asking. It's almost as if your "No" reveals that things are NOT normal. And now they can go to the next step.

I'm no psychiatrist, but I can totally see this happening even to me (and I consider myself of average intelligence). I can imagine myself asking such a "dumb" question, just to solidify the non-normalness of the situation. Kinda like, breaking the ice. Coming to terms. Dismissing the dream of a perfectly healthy newborn.

Because we all know, that a newborn in the room with his mother is probably a healthy newborn. Your "No" is what may be the kicker to help the parents realize that THEIR world is NOT normal.

Just a thought....

1:42 PM  
Blogger WendyLou said...

Calling you on this one... Please give parents the benefit of the doubt.

Rooming in, leaving the hospital with the baby and circumcision (as abhorrent that practice is) are routine and NORMAL parts of child birth. NICU, prematurity, life threatening conditions are not.

1) What types of medicine is mom on? Maybe she is unable to think clearly. Maybe she has a "hidden" disability. I know I must have asked some stupid questions under morphine. One of the reasons that I had so many problems with the social worker is because of a conversation she and I had when I was doped up on pain killers from my surgery. She used that conversation against me through out our NICU stay.

2) It was not a trivial thing when I could not see DD for 3 days due to a cold sore. It was heart wrenching for me. I may know that that was best for her, but that did not make it any easier to be separated from my 3 day old.

3) How much pressure has "society" placed on her? I mean, no one's birth plan or even birth idea includes a NICU stay. Her mind just went though a great trauma of her baby not breathing, her hormones are ragging, and you expect her to ask if the ventilator will harm her child's eye sight or hearing? She does not know enough to ask the questions. She knows she should ask a question, so she comes up with the first one in her mind, which may seem trivial, but at least she is trying to get information. NICU is not part of her imagined, planned for, hoped for birth.

4) Not having your baby with you in the room and leaving the baby in the hospital is not a "trivial" matter. It is gut wrenching to be the only mom on the unit without a baby. It is so very, very hard to leave the hospital and leave your precious, fragile, new baby there. I felt that I had abandoned my dear one. To a mother, this is all wrapped up in the emotions of a NICU baby. I thought I was prepared to do this, knowing DD would be in the NICU, but nothing could prepare me for the onslaught of emotions I experienced. The mother in your example had no idea this would happen, so she had no emotional preparation for the NICU stay.

I'm in agreement with Kelly "Read into the question." What she is really asking is how serious is this? How long will this go on? How worried should I be?

If the baby cannot go home with you or room in with you, that tells you this is time to worry.

Frankly, if you are saying that the baby was better that evening, I'd be asking the same question. She does not know medical protocols. She heard you say the baby was a normal pink baby. Well, normal pink babies go home with their moms. I assume she was asking how long the baby would need to stay, and could not figure out how to ask it.

Like Kelly said, we use lighter questions to get to the tough information. I don't believe that a question about when the baby will be going home is an unvarranted question at all. She just phrased it in a manner which seems less than intelligent.

2:04 PM  
Anonymous Dianne said...

I think you're being unduly harsh here. Labor and delivery are difficult under the best of circumstances and adding to that the stress of the baby being sick, I can easily understand how the parents could come up with bizarre responses to things.

When they told me that I needed a c-section, my first thought was "I can't do that, a non-intact peritoneum will make colonoscopies harder." There I was with a fever heading up to 105, meconium staining, a fetus that was starting to have some nasty decelarations, and a labor that simply wasn't progressing and I was worrying about what--a procedure I might need in 15 years? Not logical.

I was able to get past that fairly quickly, possibly because I knew what meconium meant and was already anxious to get the baby safely out, but that moment of strangeness gave me some insight into why people come up with these bizarre concerns. Sometimes its just too much to take in and you retreat to concern about trivia in order to cope. And sometimes the brain just gets weird under stress.

2:54 PM  
Anonymous Anonymous said...

sometimes it IS strange that family of infant don't seem to 'get it' at all.i mean,c'mon,you're at the warmer at delivery with an infant with NO respiratory effort,actually bagging the baby,and the first question the 40 bezillion relatives in the room have is 'how much does he weigh?' ???? what's that about? well-baby nurse

4:55 PM  
Anonymous Brooklyn Girl said...

As a patient, it's often hard to feel that you have enough information to ask the right questions.

Also, in the birth and breastfeeding classes sponsored by many hospitals, they really drill it into you that if you don't start nursing your baby AT ONCE, your breastfeeding efforts are doomed and therefore you're a terrible parent right out of the gate (they don't tell you that you may not be able to start nursing at once if you had a c-section or if there are complications with the birth).

5:33 PM  
Anonymous Anonymous said...

I also think you're being unduly harsh on the parents for this one.

I don't think the question is so much "aw, but I wanted to hang out with my baby" as it is a confirmation that things aren't all right.

I mean, you're sitting there with a particular expectation of a scenario happening: baby is born, baby goes to room with you, baby goes home with you. And you see all the doctors around you doing mysterious things that look scary, but you figure that's just what happens when babies are born. After all, there's a good chance you've never been to a normal birth before, what do you know? You aren't the one who just intubated the baby, you aren't the one who has a differential in your head for things that could go wrong, all you know is that you've just given birth.

So all of a sudden someone comes up to you and explains: my first reaction would very likely be "You mean ... something's wrong with my baby?" which may very well come out as "You mean ... the standard thing that should happen next, which is my baby coming to room with me ... isn't going to happen?"

I can certainly see myself saying this, and I'm a medical student.

5:34 PM  
Anonymous Anonymous said...

I can't tell you how many times I've been given bad news the first thing out of my mouth is something totally stupid and irrelevant.

One of the best is when my daughter's elementary school called shortly after school started for the day to tell me that she had fallen and hurt herself on the playground and I needed to come get her. My immediate reaction, unfortunately verbalized, was "But I haven't taken a shower yet!" As soon as the words left my mouth, I wanted to die of embarrassment.

I think I said that mostly because the call was so unexpected, and it totally threw me for a loop. It took a few seconds for my brain to catch up with my mouth. So add in the stress of labor, the dawning realization that maybe there is a problem, which goes against the normal expectations, and I'm surprised you don't get more unusual comments.

christi

6:29 PM  
Blogger Terrible Palsy said...

I often wonder if my reaction was found weird by our attending Neonatal. I spent the 30 seconds before my son was sent to NICU apologising to him for failing him. Is this an unusual response Neonatal Doc?

6:59 PM  
Anonymous Anonymous said...

Do you have any children?

Look at it from the mother's perspective: she's just spent nine months with this child inside her. There are enough postpartum hormones flowing around to make a mother feel weird and wrong under the best of circumstances. Many of us want only to cuddle and hold our newborn baby. When we're told that we can't, for whatever reason, that goes against every instinct our bodies are giving us. Even if intellectually, we know that the baby needs urgent medical attention.

9:03 PM  
Anonymous Alex Powell said...

First, I wanted to say that I'm a huge fan of your blog.

That said, I totally agree with wendylou on this one. Please don't be so hard on these parents.

The difference between learning your child is not breathing before taking them to a fairly routine thing like a football game and finding out your child is not breathing immediately after giving birth is that you don't have a baby every day, every weekend, or even every year, for most people. The entire experience is overwhelming even when things go perfectly.

I have twins who were born at 32 weeks. I am sure I said a lot of stupid things in the delivery room and the first several times I saw them in the NICU. I was shocked and dismayed that they had umbilical lines and were on ventilators, for example. And I knew they were going to be early - I'd been on hospital bedrest for a month before they were born.

But - I just had no idea, for one thing - what an ICU, any ICU looked like, what a sick baby looked like - the whole package is pretty overwhelming. A layperson really don't understand what's normal, what's not.

Plus I had just had major surgery after hours of labor, and was very sick myself. When the neonatologist came in to talk to my husband and myself, I was seeing two of him, and they were both pretty blurry.

And no, leaving the hospital without your baby isn't trivial at all. It is one of those things that I have ever personally gone through. It literally felt like a part of my body was being torn off and left behind.

So I'm sure I was spouting all kinds of stupidity, when I wasn't unconscious or crying. Intellect really went right out the window for me. I hope my daughters' caregivers did not think I was an idiot or an incompetent parent.

9:27 PM  
Anonymous Anonymous said...

i do that sometimes.

When i am facing difficult issues i will do a diversion to try to avoid reality. Also, the diversion is another way of "asking for a confirmation that i heard the bad news correctly".

Shock makes me do this sometimes.

10:15 PM  
Blogger Anne said...

I have to say, leaving the hospital without my baby was the hardest thing I ever did. I know, just about every conversation with the neonatologists revolved around when could we take him home. It was even harder to walk back into the hospital and watch happy families going home with their babies. To say it still haunts me over 4 years later is only a slight exageration. Just about everyone we interacted with was wonderful but it was an awful, disconcerting time. I'm sure we said some pretty dumb things. And Dr.s aren't exempt from stupid comments. The first thing the neodoc who examined our son asked my husband was whether he looked like our other children. And he does, he just happens to have Down syndrome. The Dr could have presented his suspicions in a gentler way.

10:18 PM  
Anonymous Anonymous said...

Man on man....Give the parents a break! We're talking about a state-of-crisis here...I know these thoughts might be in the back of your head, and perhaps you are just being brutally honest, but it just sounds so insensitive. And like the previous person said, doctors sure are not exempt from their own stupid comments. After my child pdied, my doctor would not give me any details of her disease other than the name?? When I asked for more, she said, "You don't need to trouble yourself with all the gory details..." Now that is stupid!

10:30 PM  
Anonymous Olga, L&D RN said...

I'm startled. I think you're unusually sensitive and yet---surely you've read that "Welcome to Holland" letter!
I think being told one's baby is in the NICU is a bit like being submerged in icy water. You're breathless and your mind can't keep up.
These questions are just a reflection of the fact that they're receiving information sort of backwards--the most difficult first-- and so the easiest questions (that you'd think were intuitive) still feel unanswered.

Add to that the loss of the original plan (be it unfairly pushed by prenatal classes or whatever) and one is bound to be quite disoriented.

And if your patients are uneducated or immature its just that much worse.

All of which you know, and usually you're pretty careful to go over things thoroughly and slowly according to past posts. So--keep up the good work, sorry for all the rough feedback here.

Just remember to take a nurse with you---I've found it invariably helpful to always round with my docs so I can repeat the information as often as necessary, explain it, use different terms, measure their understanding.

12:22 AM  
Blogger Awesome Mom said...

I am going to have to go with the crowd on this one. I am actually pretty level headed and able to ask intellegent questions but my husband asks a lot of what I consider stupid questions. This is his way of trying to understand what is going on with our son. Often I am actually glad he asks the question because I often learn more that way.

Leaving your child in the hospital is incredibly hard. It is heart wrenching to the extreme so I can hardly blame that mother for asking that question.

12:42 AM  
Blogger Thea said...

I'm a fan of your writing, but I have to agree with the majority calling you out on this one. I'd translate "you mean he can't room in with me" as really meaning "you mean he's so sick you're going to take him away? Will I ever see him again? Is he dying? What's going on? How serious is this, after all???"

That's what was going through my head when my daughter was taken to the NICU. What came out of my mouth (powered by my exhausted body and somewhat oxygen-starved brain--I lost a lot of blood) was stuff like "you mean she has to stay there all night?" But what I was thinking was, omg, I just FINALLY met her, she seemed so perfect, is she dying, what's happening, I want my baby!

(She turned out to be just fine, btw.)

4:02 AM  
Blogger neonataldoc said...

Wow, I'm getting a lot of flack on this one! Okay, I won't be so harsh about parents - but please realize that I didn't say or do anything to disrespect this mom, but I can't help having private thoughts. And thanks to all who said they're fans of my blog.

Terrible palsy, I've never heard a mother appologize to her baby for failing him when he went to the NICU, but it doesn't surprise me to hear you say that, because parents, especially mothers, of NICU babies often feel very guilty, even though there's usually nothing they did wrong to send their baby to the NICU.

11:07 AM  
Anonymous Anonymous said...

I have to go with the crowd on this one also. Most women that have just given birth may have been without sleep for 1-2 days depending on how long labor lasted, possibly in pain for many hours, and are surely overwhelmed. I had an epidural with one child and was drug-free with the second and in BOTH cases I could not think clearly due to the epidural the first time and whatever my body was doing to deal with the pain the second. And when a baby that's been inside your body for up to 9 months is forced to separate from you and be hooked up to machines, it is just heart wrenching for a new mom.

I've seen doctors try to walk that fine line with not scaring patients too badly while still trying to inform them of a situation that may be rather grave. Communication works both ways and it isn't always the patient's fault they don't understand the seriousness of the situation. Unless they happen to be neonatal doctors, they're just going to have a whole lot less information and experience, no matter how educated or intelligent they are otherwise.

11:08 AM  
Anonymous Anonymous said...

Sorry I got to giggle about this one. I can see how frustrating it must be for medical staff. I must admit thinking this when my baby was whisked off to the NICU but I knew better than to ask aloud. I think your reaction though assumes parents actually understand what is involved in some of these treatments. A lot of things can be done bedside. It's often in the birthing promotion material for hospitals how baby will be kept in the same room, checked over by the ped in the same room etc. Until I had the experience of having a baby in the NICU, I wouldn't have understood completely the ramifications of being on a ventilator. I would have wondered why they couldn't put it beside my bed :) Now that probably is possible, but the nursing staff and monitoring wouldn't be feasible. What is feasible and not feasible is not always apparent to a mother who has been surprised with a baby heading for the NICU. Why don't hospitals give a FAQ type brochure to all expectant parents before the mother goes into labor, it could answer FAQ about c/s and NICU stays. It'd be nice to have this info. before labor, and might make your jobs easier.

12:18 PM  
Anonymous Anonymous said...

Part of the problem here is that we don't have enough information about the mom's affect when she said, "You mean she can't stay with me?" The responses to this post seem to involve a lot of projecting one's personal experiences onto this situation. As an ob/gyn I have seen all kinds of reactions from parents to the news that their baby is sick. It's hard to tell how this mom is reacting, based on the information we're given. Does she just not care that the baby's sick (believe it or not a fairly common reaction) or is she genuinely heartbroken that her baby is being torn from her arms?

7:34 PM  
Anonymous Anonymous said...

You are being way too harsh on these moms here. I had to fight to get to 35 weeks to deliver in my small rural community hospital. I had severe PIH. My bp on 2000mg of Aldomet and 60mg of Procardia a day was running 160/120 on very strict bedrest. My whole thought was I don't want to go to the big university hospital. I wasn't rational. My hospital did not have a NICU and I had a terrible feeling of being dumped like I was the first time being passed from oncall dr to oncall dr. The midwife from my dr's office even scolded me and said do not even think about not calling this office if something is wrong because you don't want to go to Children's.

When it came time to deliver she was preterm. She looked good and was breathing on her own. However, as soon as she was born, they called her ped at home. He made her go to the newborn nursery and be hooked up to monitors for the night as a precaution. I was soooooooo upset. I wasn't going to get to keep and admire my new baby that I had worked so hard for again. I ended up getting her the next morning after her ped checked her out. But I had missed her first feedings, her first bath. The next night the nurses took her again because I was sick. We went home 48 hours after delivery.

However, we had to return to the maternity floor because someone had forgotten to do her newborn blood testing. They said they would run a bili test as well.

Turns out that her bili was very high - 24. She was immediately readmitted in the maternity dept and then transferred to peds when a bed became available.

I was worried sick about my baby, but I was so upset that they were taking her away from me. They wanted to get her under the lights asap. I wanted to hold her. I even told them and the midwife for my dr's office (she happened to be on the floor at the time), that they kept taking my baby away from me. At the time I was an emotional wreck. I only got to hold her while feeding her every three hours. That was it. 5 minutes at a time. That is really hard to deal with.

While it may seem that these moms should be asking the more serious questions. Sometimes, we are so tired and sick ourselves or on medications from labor, that we can't comprehend in a way that a normal rationally thinking person can. So try and put yourself in our shoes. You are way way off the mark here. I agree with the others.

7:37 PM  
Blogger Dream Mom said...

I won't add my two cents to this because it appears the crowd has already won. LOL!

I do have a question though. When I read the following, "The baby was floppy and not crying...he'd had a bowel movement in utero..." How do you determine that this was not a seizure? That was the first thing I thought of when I read this. Thanks.

11:59 PM  
Blogger The Laundress said...

Okay,

I will toss in a bit more.

My first-born, daughter, was a meconium baby.

I had NO idea this was any sort of big deal. We did our pushing and moaning and she popped out and was pretty noisy and cute and then DAMN, a wall crashed down and a SWAT Team grabbed our baby...

No drugs, no epidural or whatever. But maybe too much adreneline? I think I fainted or something, all that happened right after that is a BLUR!

Next day, I woke up and the nurses had misunderstood and thought that I was the mother in the adjacent room (a drug addict giving her child up for adoption).

So when I asked to see and feed my "meconium" baby, the nurse said "I don't think that is a good idea" which freaked me out...

Then another nurse came in and told me I should surrender about my baby, because I had already agreed to give her up. I started yelling for my husband (he had gone home to walk our geriatric dog). It was just the WEIRDEST SCENE.

Then my husband came and they figured it all out and I got beautiful C. in my arms and she was perfect and P. and I were happy.

But on our way home, P. spilled a flower vase with pretty floral arrangement. He began to swear ( I swear a lot, not P!).

The nurses dragged me off in a corner and said "Clearly your husband is abusive and you and this delicate baby should NOT go home with him!"

Man, did I FREAK. My husband is the gentlest and most sentimental, tender fool in the universe.

I am a much bigger threat. Hee hee. Not hardly, but more than HIM! He cries a lot, like whenever TV news announces anybody under age 30 getting killed in the WAR.

Yeah, so husband is sweet but no public enemy.

12:36 AM  
Blogger WendyLou said...

Neonatal doc---

I apologized to DD every time I left. In a letter I wrote to her and posted on my blog the day before she was born, I begged her forgiveness for having her born early.

I usually apologized to her mentally, or very quietly whispered this to her through the isolette. DH , the Lord, and a very trusted nurse were the only ones who knew I apologized to her. It is not surprising that a doc is not aware of this, for me this was done in the tender moments where I felt alone with DD.

I mentally know I did nothing wrong, but my heart told me otherwise.

I apologized mightily to DD when I knew a cold sore was coming, and that I would not see her until better, and the damage I was so worried this would do to her.

Why was I sorry/apologizing? I had no frame of reference for what we were all going through. I now feel the mixture of fear, joy, grief, guilt, pain (physical and mental), loneliness, envy, impotence, wonder, sadness, longing, stress, and oppression were all wrapped up together. How do you express that? Add postnatal hormones and watchout. The emotions came out to DD as I love you, and I'm sorry. In others I was meek and pliable, to others, I was nasty and struck out.

I cannot remember one conversation with any of the neos caring for DD which did not involve a discharge discussion. Maybe that was this mom's way of trying to discuss this.

3:57 AM  
Blogger neonataldoc said...

DM, it's fairly common for a baby to have a bowel movement before delivery; it's called mecoium staining. Also, a baby being floppy isn't that rare. We saw no seizure activity.

4:34 PM  
Blogger Kelley said...

I appreciate your private thoughts, doc. As easy as it is for people to say, "you're being too harsh on parents" etc., it's equally easy for me to say you guys are being too harsh on the doc. He's just giving his thoughts. And I know neonatal doc doesn't need anyone defending him, that's not what I'm trying to do. Just trying to give another perspective. I'd hate for people to know many of my private thoughts. I think it's pretty cool he shares his. Many times people are quick to tell him not to judge parents (in this case) but I think he's being judged quite a bit also. Just take it for what it is. Sooooo not trying to sound condescending, either. Just my 2 cents, prolly worth less than one.

5:23 PM  
Blogger stockingup99 said...

What about all that has been written on Kangaroo Care? It is a matter of convienience for the staff to exclude mom. In some less draconian countries the critical baby is placed on mom's chest, and then the equipment is hooked up. The results are dramatically better for the baby, but mom is stuck under the mountain of equipment too.

8:57 AM  
Blogger Ex Utero said...

NeoDoc,

Just thought I'd give you some moral support. I never think thoughts like that about parents, NEVER! But I'm glad there's somebody else out there who people can take pot shot's at beside me.

Just a thought, next time you should write about how neonatology is altering evolution. While you're at it, use some politically incorrect photos.

You were an easy mark on this one buddy. ;)

11:51 AM  
Anonymous katszeye said...

I absolutely love reading your blog. I have learned a lot and truly enjoy your writing. I currently am pregnant with child #2 and would never have thought I would want to read a blog about what can go wrong (and many other thing) while I am pregnant. :-)

On this particular subject, I wanted to weigh in on how I felt when my first child was taken to the NICU right after delivery. I was very much out of it (drugs for emergency c-section) and didn't quite understand what they were telling me. On the one hand, the doctors are saying everything is "no big deal" and "will be fine." On the other hand, I can't hold my baby when I want to and they are checking his glucose (what seemed like) every 14 seconds. I'm told "not to worry about it," but they won't let me breastfeed him. I am told just to go home (without him) and that it will be fine. I guess what I am trying to say is that, in the interest of trying to help me understand that the problems DS had (jaundice, glucose) were fairly mild in the grand scheme of things, the doctors and other medical staff had me wondering why I couldn't do the "normal" things with him (breastfeed, take him home). In hindsight, I wonder if my son's doctors didn't think I was too focused on the wrong things. Frankly, as I sit here writing this, I don't remember precisely what was wrong with his glucose levels. I am sure the doctors told me, but I was too out of it (hormones, guilt, grief, panic) to remember.

Again, I just wanted to say thanks for authoring such an intersting and informative blog.

12:53 PM  
Anonymous Anonymous said...

I came across your article and just wanted to stick up for the Mommies. I know when I had just given birth I felt a little "out-there" for awhile. I hadn't taken any meds, but I think the birth process is very tiring and stressful and I know I wasn't able to think clearly for a little bit.

3:03 PM  
Anonymous Christina said...

As a PICU nurse I have to jump in here to defend neonatal doc (at least partially) and say that parents do the same thing when their older baby/child is in the PICU- so not all of these "random" questions can be attributed to postpartum hormones. The other day I had a baby who had six zillion tubes coming from her, as well as a cute little bow placed in her hair by the previous nurse. The parents came in, were asked if they had any questions about the equipment, and dad said "what is that little gauze thing in her hair?" They had no further questions, even when encouraged to ask.

But I completely understand what everyone else is saying- especially for parents with no previous experiences with the medical system, a small detail may be the only touchstone that they can grab onto and try to make sense of. I always try to explain as much as possible to parents so that they can begin to understand the different machines and what they mean. Parents who have become familiar with the ICU set-up are many times proud to be able to come into a room and read off the oxygenation level of the child, or their heart rate, or another measurement from the monitor.


Oh- and one thing regarding stockingup99's comment- with the littlest babies on ventilators- the tube in the throat is many only centimeters away from being potentially displaced. Kangaroo care is wonderful, but when babies are vented, it just is too precarious and dangerous to attempt. I've been to healthcare facilities in several other countries where mom isn't ever allowed into the ICU- even when their baby is there for months- so we're not the most draconian out there...(not that there isn't always room for improvement...)

7:17 PM  
Blogger neonataldoc said...

Thanks, again, all. Ex utero, I laughed out loud at your comment. Stockingup, I'm a big fan of kangaroo care, but there are some times when we cannot use it.

2:35 PM  
Blogger purple_kangaroo said...

I had to chuckle at this, remembering my first child's birth. I'd been in labor for 2 days, making very little progress and then the baby finally broke my tailbone and was able to get out.

She had inhaled meconium, but I had very little idea what that meant.

I was so confused and upset that they were whisking her away and doing all kinds of things to her, and she wasn't crying. I was scared, and worried, and wanted to know if she was okay.

But the question I asked, loudly, over and over again until someone finally answered me, was:

"Is it a girl?"

She ended up fine, and later I kept asking if she was okay. But I think my first question was about her gender. That must have made the medical personnel shake their heads, I'm sure.

Now I have a very sick baby and we don't have a diagnosis yet. I'm struggling to communicate with doctors. I just want somebody to help my baby, and it's so hard to communicate well when so many emotions are overwhelming you.

1:36 AM  
Anonymous Anonymous said...

Something similar happened to me (the parent)when taking my 3 year old to the ER this week. We weren't sure how sick he was, but had been told by our doctor to take him to the hospital, to rule some things out.

All the way to the ER, with my cheery son in the back seat, singing and acting fine, I reminded myself to ask the doctor if our child could attend school the next day.

After a 2 hour wait in the waiting room we saw the doctor. He did some tests, and came back in to tell me the results. My husband had left the room. I was nervous: my husband can keep facts and instructions in his head. I'm not so good at it and was struggling with a grumpy, past-bedtime 3 year-old. the doctor went into a long, detailed explanation about what he thought was going on, and that we should watch him carefully over the next two days, not let him out of our sight, note this and that, and bring him back to the ER if this and that happened.

I listened carefully, trying to memorize it for my husband, and then asked, "Can he go to school tomorrow?"

The doctor was very nice, and just repeated, no, I had to watch him closely.

I just couldn't process information fast enough, and couldn't understand that my acting-like-normal child was very sick. My ridiculous question was just a signal to the doctor that I wasn't comprehending the situation.

I think it's OK that you are scratching your head about the parents' behavior in these situations. We like you to be level-headed. That's your job.

Angi L.

12:21 PM  
Anonymous KM said...

You live in one world, highly medical, and the parents (most of them) live in another, not medically oriented.

Spell it out for the parent: "We anticipate your baby will need to remain hospitalized for X days/weeks/months." And then outline the plan of care.

If my baby aspirated meconium, I wouldn't automatically equate that circumstance to X days in the hospital.

My first child was preterm, relatively healthy, all things considered, and went downhill from there following numerous hospital-aquired infections. Arriving in the local children's hospital PICU, an inter-hospital transfer, the attending team simply told us our DS would require 6 weeks of hospitalization. A huge blow for us, as we'd just had 3 mos. in the hospital and I thought, even after all of that, that these marvelous doctors would give my DS some medicine to cure him and he'd be home in a couple days.

So, parents expect the ideal. If it can't be, then be direct. It sounds like you're new to the field.

12:32 AM  
Anonymous Anonymous said...

I really enjoy your blog and I can see you're very compassionate. It's only natural that a person cannot always empathize with others in some situations, so I hope you don't mind a lengthy reply from one who used to ask idiotic questions. I apologize that this is very long, but it hits close to home so I have a lot to say on the subject.

By way of background, I went to a top prep school, a college consistently ranked in the top two, I scored 780 on my Math SAT, and I have a Master's degree in pure mathematics - I even solved a previously unsolved math problem while still an undergrad. My point is, I'm not an idiot.

I'm also a former NICU mom, so I hope I can help you understand us better. Imagine you're in Europe and you're flying home for your daughter's wedding. You've planned for this for so long, you're really looking forward to it. Let's also say that for the past 9 months, everybody has told you the importance of being there (not that you needed to be reminded, you knew this already, but other fathers-of-brides have stressed it to you to no end.)

So, with this in mind, you booked a flight to get you there with time to spare. Then, early in your flight, the stewardess announces that the plane will have to land in London because of "a little engine trouble." Your first question very well might be, "Will I be able to get back to New York by tonight? My daughter's getting married, I have to be there!"

Nobody thinks the plane really might crash into the ocean. (Well, not before 9/11 anyway.) And didn't the stewardess say it only had a "little trouble?" Now an airplane mechanic might realize that any trouble is big trouble, but a passenger might think, a little trouble means almost no trouble, of course we'll get back to London okay, but will they put me on another flight right away? Will I make it home in time?

Now, just as the flight attendant said there's "a little trouble" with the engine, you told the mother that the baby needs "help breathing." This means nothing to non-medical people. Plus, that mother had it drilled into her head from countless hours in Lamaze and from parenting books and her friends that her Mission is to deliver that baby and then hold it right away and bond with it. The plane was diverted, but she has not been convinced that anything's seriously wrong, and her mind is still on the mission.

As far as the average American woman is concerned, ALL babies are born healthy and go straight into your arms, except in 0.0000001% of cases, which in our minds means nothing. We don't have a "paradigm" of what it means to have a sick baby, and when it's presented in watered down language, of course we don't get it. And when you're pregnant, nobody tells you horror stories of the things that can go wrong, so you truly don't know from any of the things that happen in a NICU. To tell you the truth, I never HEARD of a "NICU" before that pregnancy. My family was all healthy and none of us ever required hospitalization, and since few people we knew ever had babies, I never heard of any problems or even of the existence of such a thing as a NICU.

Here's a more in-depth example. I'm sorry if I get emotional at times, because this example was extremely turbulent for us (using the airplane analogy again LOL). When my son was admitted to the hospital after having seizures (6-week-old, 34 weeker), a resident came in and told me my son was "acidotic again." I said, "What does acidotic mean? And what do you mean again?" (It turned out he had been sick at birth with metabolic acidosis and treated with "bicarbs" during his NICU stay, but I was never informed of his illness or of the fact that he was being medicated.) I had never heard the word "acidotic" in my life, so what she said made no sense to me. She said it means there's too much acid in his blood. I asked what it means, and she said, "Maybe his kidneys are giving out too much, we're not sure. We're going to do some tests." She left me feeling bewildered - what does it mean for kidneys to "give out" too much? She spoke to me all right, but she told me nothing. And I'm SURE I asked her when I can take him home - what mother wouldn't, especially if she had no clue her son was really sick?

My son was transferred to a children's hospital where I was told he probably had a metabolic disorder. Metabolic disorder? Never heard this expression before in my life. I even remember asking the doctor "You mean how a slow metabolism means you get fat? And a fast metabolism means you're thin?" (What a dumb question!) You can well imagine the pitying looks I got. They told me his body doesn't have enough of an enzyme and can't process glucose properly. "Ummm, do you mean he's diabetic?" They told me to wait, the specialist will explain everything to me.

Soon after that, a patient in the crib opposite my son's was receiving her diagnosis. This baby was almost two but couldn't sit, and had a strange face with slanted eyes, and was clearly retarded. I overheard a doctor telling them, "We think she has a metabolic disorder." I flipped! I buzzed the nurse and insisted they get the doctor back. When he came, I was crying and said (quietly so that family wouldn't hear), "If that's what a metabolic disorder is, I don't want it! That baby isn't normal! Is that what my son has???" Situations like this are pure emotion, intellect has nothing to do with it. The doctor still wouldn't tell me anything and said the specialist was on his way and would explain everything to me. (He didn't - nobody did.)

The specialist came in to explain the disease, but again told us absolutely nothing in a whole lot of words. He explained that there's an enzyme which is insufficient, and then he started to draw a diagram. Then he explained how there was a problem at one step in the electron transport chain and I asked, "Is that the Kreb's Cycle?" He said yes and went on with the diagram, showing how instead of going this way, we now went that way, while I sat there thinking, the Kreb's Cycle was the only test I ever failed in my entire life, is this some sort of sick justice?

After he talked a long time (saying nothing that made any sense to us) we asked what's the treatment. He dodged the question and said there's a diet, but we'll wait until the diagnosis is confirmed before we discuss it. I also asked what the prognosis is, but he dodged that as well. (It never occurred to me that there are illnesses without cures- don't all medical stories on TV or in magazines have a happy ending?) It was my mother who finally asked, "Will he live?" I never dreamed that the opposite could possibly be true, so I said, "Mom, what kind of question is that?" Well, apparently, the most appropriate - she hit the nail right on the head. But again he dodged the question with vague, evasive answers. It was only my mother who realized how serious this must be - because if doctors don't answer, it means bad news. (Why can't they just answer and give the bad news? I think because it's easier for them not to see the pain.)

Can I just step in here and say something is truly wrong with the medical profession if patients have to decipher the seriousness of a situation by whether or not the doctor answers their questions. Why can't doctors just be direct?

Anyway, I still don't understand how doctors can tell us nothing and then get annoyed that we can't read their minds to ferret out the truth. I know it must be hard to tell a mother that her baby's life is endangered because then the doctor has to deal with a hysterical woman - which, in my opinion, is still the right thing to do, she deserves to know even if it bothers the doctor to see her reaction. (A perfectly normal reaction, by the way, to finding out your child might not live.) But if doctors must couch things in vague terms that convey little or nothing, at least don't get annoyed when parents ask dumb questions. Doctors think they've told parents so much because they know the implications of everything they just said, but the mother has no clue, and all you've offered her are... clues. Not facts. Not information.

I can tell you honestly that from a regular hospital's NICU, to being readmitted to that hospital 6 weeks later, to 10 days in ___ Children's Hospital, to three specialists we had to follow up with every week, NOBODY told us anything direct other than what medication to administer and how often. We even had to dig out the diagnosis ourselves by asking for it, not by having it given to us. Then we learned everything we knew about it on the internet - no medical person explained the diagnosis to our faces.

In fact, the doctor expected us to have to look up the diagnosis on our own at home and warned us - when you go home and look it up online, keep in mind that not everything is how it sounds - the warning labels on Tylenol sound terrible, but really it's not that bad. He never said another WORD to us about what it meant or what to expect, he perfectly planned for me to go hysterical far away from him, with nobody to answer my millions of questions but a computer screen - because it's easier for him.

Welcome to pediatrics as it's really practiced. Unlike what you see in movies (such as "Lorenzo's Oil"), nobody sat down and told us directly, "Your son has ____ disease. The prognosis for this disease is ____. He will likely only live ___ years, but in some mild cases this could be ___ years. There is no cure, but we can slow its progression by doing ____. I'm very sorry." No, it was here's the diagnosis, go home and look it up.

I hope I've conveyed to you how hard it is to be on the parents' side of the patient's bed, and how this is made harder by the fact that doctors try to talk around the problem. Your best bet: be direct. Tell them how serious it is, use the word "serious."

By the way, the disease (pyruvate dehydrogenase deficiency) slowly disappeared as my son's body developed the enzyme it needed all on its own by three years of age - which apparently sometimes happens, despite my reading online that the illness is almost 100% fatal within the first few years of life. My son is a perfectly smart and healthy 5-year-old today who excels in school.

Now I'll tell you what truly was the dumbest comment ever made - and it was made by one of the pediatricians. Upon not being able to pronounce the diagnosis, he laughed and said, "Thank God for specialists!" A real nice thing to say to the parents whose baby might die from that unpronouncable word, a long slow death over several years.

10:23 PM  

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