Thursday, January 04, 2007

Devotion

She saw me as I walked past the NICU waiting room and hailed me. The mother of one of our graduates, she was now at the hospital because a relative was delivering a baby. I was delighted to see her and get an update on her only child.

Born at 28 weeks gestation several months ago, the baby was mature enough that he should have done well, but he was very small for his age and never did well from a respiratory standpoint. He even needed to go home on a ventilator. (Note to clinicians: I suspect he had some degree of lung hypoplasia.) Now followed by a pulmonologist, he had been re-hospitalised for breathing problems and only recently gone home again.

It was a little discouraging to hear mom tell me about him, because he clearly still had significant lung disease. He still needed a lot of help from the ventilator and a high oxygen concentration to maintain a normal level of oxygen in his blood. In fact, it sounded like his lungs had not improved at all and perhaps worsened since we discharged him, which makes you wonder if he'll ever improve and come off the ventilator, or whether he'll even survive. On the bright side, though, his neurodevelopment sounded pretty good. Mom said he was smiling and rolling over - no small feat when you're attached to a ventilator pumping forty breaths per minute into you.

Mom, only 20 years old and single, seemed to be doing pretty well, even though it takes a tremendous effort to care for a baby on a ventilator at home. She was approved by insurance for 16 hours of nursing per day, a big help, although they could not always find enough nurses to fill the 16 hours per day. Also, mom seemed to be pretty realistic about her baby's condition. In a statement that was hopeful yet heartbreaking at the same time, she said, "I don't know if he'll ever get better, but I'm sure going to enjoy him in the time I have with him."

I've written some unflattering things about young single mothers (mostly about ones with multiple pregnancies and kids), so it's only fair that I report a good one when I see her. I was tremendously impressed by this mother and her devotion, especially at an age when she wouldn't normally be inclined to sit around at home very much. An attractive woman with nice clothes and a stylish haircut, she looked like someone who should be having a date at a nightspot or walking the mall with her friends; instead, she is at home nearly all the time caring for her fragile child.

We can take nothing for granted in life, and that is especially true around childbirth. Regardless of whether her baby survives for more than a couple years or not, this woman's life will forever be changed because she had a sick, premature baby who was on the bad side of outcomes. My heart goes out to her, and I wish her all the best.

16 Comments:

Blogger munkeesmama said...

Wow, Just wow. You have a way with words and I commend you for keeping this blogs. I know it has helped quite a few of us preemie parents, especially those of us with micro preemies...My daughter's blog is www.munkeesmama.blogspot.com If you're interested.

2:55 PM  
Blogger The Imperfect Christian said...

Thank you. I was one of those single teenage moms who had to fight off the stereotypes others had cast upon me. My son is now ten years old, I am married with two adopted children with Down syndrome and all three of my children are doing above and beyond what was ever expected of them. My son is a very well-adjusted little boy who is greatly loved by everyone in his life. Not all us single moms can't make our way. Not all of us fit into that mold everyone tends to want to dump us in. Thank you for recognizing that.

2:57 PM  
Blogger Anne K. said...

I am constantly moved by your candor and insight. Thank you so much for sharing your thoughts and raising so many important issues, remarkably free of judgement.

Among other service projects, I make a lot neonatal bereavement garments and blankets for our local NICU in Western New York. It seems like a small way to help during a tragic time. I would be very interested in any comments you have about whether these things are of value, or if there are other things you would recommend for volunteer quilters and knitters like myself. Thank you so much.

3:19 PM  
Anonymous Anonymous said...

I've just found your blog and I must admit to being quite moved by a number of your articles.
This latest one brought tears to my eyes...thankyou for taking the time to note this 'exception to the rule' in regard to single teen Mums.
I was 19 when my daughter was born at 26 weeks; the result of date rape. Over the years many people have felt it to be their right to tell me how to raise my baby and have assumed that I slept around and lived off welfare. I am currently at university studying a triple major in an attempt to get my BA. I work as a web-designer and a computer teacher. I am heavily involved with my daughter's school (she is 6 and heading into Grade 2) where she is excelling academically. I am very strict because my daughter has difficult behaviours stemming from her prematurity - these are triggered by foods and over-stimulation. She's not like the other kids, and we've both had to accept that in the last few months. I work at the local community centre helping families in need/crisis and also with their Young Mums Group, of which I was the first member, and now am using them to work on some research for my dissertation.
I'd like to think I'm one of the exceptions, but when I look at all the girls in my Young Mums Group, I can't help but think that those other girls are the exceptions. The girls in our group have made their mistakes, some are married, some are not. All are inspirational in the way they put their children ahead of their own needs.
Yes, I know some of those girls with mulitple pregnancies, multiple fathers, and multiple men being run through their children's lives, and it's a sad thing to see.
Most of them are uneducated, have low self-esteem, have had the behaviours role-modelled for them, and unfortunately, don't believe that there is anything else out there for them.

Sas in Australia

4:59 PM  
Anonymous Anonymous said...

my heart goes out to this sweet lady and her precious little one too.take care sir

8:30 PM  
Blogger Terrible Palsy said...

I'm sure that the woman you speak of has a lot of strength and character despite her young age. Fourteen years ago, I became a mum to a full termer as a teenager. I would never have been able to cope back then with what she copes with. My hat goes off to her.

12:53 AM  
Anonymous Christina said...

Hi Neonatal doc,
This is a little off topic- but I was thinking of your blog last night- normally I am a PICU nurse- but last night I was floated to the NICU.
I had stable, bigger babies for my assignment (PICU nurses don't love taking care of those tiny babies just as NICU nurses don't enjoy floating to the PICU and taking care of larger kids :) But another nurse in my room was taking care of a tiny 25-weeker who had been born the day before. She was a twin- the other twin died soon after birth. Mom, recovering from pregnancy induced hypertension was wheeled over from postpartum to the NICU. Mom was understandably overwhelmed, seeing her tiny baby hooked up to so many tubes. Of course the first question was: "when can I take her home?" and then she was concerned about the baby not being able to see as she had an eyeshield on to protect her from the bili lights. Of course this eyeshield was the least of this baby's issues, but the baby's nurse was very kind and thorough in explaining why the baby needed the eyeshield and what some of the other equipment was for. The nurse did lapse into medical jargon a little too frequently for my taste (perhaps I am more concious of this when I float to the NICU because I myself am less familiar with their terminology- when I see a nurse saying to a new NICU parent "oh her bili level is good, and she hasn't had any spells" I cringe. The parents always nod and don't generally question anything they are told- but how are they to know what all those terms mean?)

Anyway, the mother then asked "Is this going to mean she's going to be really behind?"
I held my breath to hear the response- and thought of your previous "Honesty" post and the ensuing discussion about telling parents the whole story about the outcomes of prematurity. In this situation the nurse (a very experienced, bright and kind nurse) responded "She'll catch up by preschool. She wont meet her milestones when she's little, but she should be caught up by preschool." I was stunned...But then I wondered what she should have said...or what I would have said. Mom was there alone, in a wheelchair, still weak from a c-section. It was about eleven at night. She was teary eyed, upset at seeing her baby, not being able to even touch her. To add to the stress she has 11 month old twins at home. So it probably wasn't the appropriate time to talk about possible outcomes of prematurity. But the nurse's response seemed too pat- like something that mom might latch onto and carry with her as ultimate truth. Perhaps it WILL be true for this baby. But I am curious to know what ex-NICU parents might suggest that the nurse should have said...Most- if not all- of the time as nurses we defer to the doctors to have those discussions about future prognoses. But so much happens during those late night hours in the NICU with tearful parents- it seems like there needs to be some good way of discussing it in a kind but honest way.

10:37 PM  
Anonymous Bugs said...

I think, if I were in that position (that the PP just described) I would much rather hear "Time will tell, we cannot predict the future of ANY child, but your child will have some odds against her just by being born prematurely"
honesty without brutatlity. And brutality can be a 2 way street, KWIM?

10:57 PM  
Blogger Dream Mom said...

It's not very much fun when you are on the other side of the outcomes. It's hard not to feel sorry for people when you see these things happen. Even to this day, when someone is pregnant, I always pray they have a normal baby and they always do. On the other hand, it makes it seem so easy. I think, I wanted the same things other mothers wanted, a normal baby and yet, it didn't happen.

Although Dear Son was full term, I'd like to answer Christina's question, as to what to tell the mother. I think you just tell her that being born that early can be very difficult for a baby but that for now, you need to focus on getting that baby stronger so she can go home. I would comment on how beautiful her baby was and then ask if she'd like to hold her baby or figure out a way that she could touch her baby. Having a baby is supposed to be a joyous time and unfortunately, sometimes it's not. When your child is in the hospital, the focus is always on the medical issues. Sometimes, you just need for someone to tell you your baby is beautiful and to let you hold them. I know when I was at the hospital and Dear Son was all hooked up, I wanted more than anything to hold him. I suspect that's all this mother really needed at this time.

1:04 PM  
Blogger neonataldoc said...

Thanks for the comments and compliments. Single moms, hang in there.

Anne k, I think it's great when people knit hats and so on for our babies. We always seem to use them.

Sas, you are so right about the low self esteem and behaviors modelled for some young moms.

Christina, in addition to the suggestions of bugs and Dreammom, maybe you could try to postpone that question until a better time, perhaps by saying "How about if you discuss that with the doctor tomorrow when you're not so tired," or something like that.

3:10 PM  
Anonymous Helen Harrison said...

Suggesting that such a discussion be put off when the mother is clearly able to ask the question seems cruel to me.

What she will take away from this response is: "this is too terrible for them to tell me."

And perhaps it is. At 25 weeks, this baby has more than a 50% of death or severe disability(according to Vermont Oxford stats from 2000-2003). And, if not afflicted with severe problems, the baby will almost certainly have "milder" problems, such as those suffered by celebrity preemie suicide victim Nikki Bachrach (see my most recent post under the "Ignored" discussion).

Staff who can't bear to discuss the outcomes of prematurity and NICU care openly and honestly with parents *when they ask* should, in my opinion, consider another profession.

6:55 PM  
Blogger neonataldoc said...

Helen, the discussion of the outcome of a 25 weeker - or similar parient - is not a short answer question. If we don't have time to give it a proper response, I think we have no choice but to either defer it or partly answer it and explain later, but I'm not sure that a partial answer is very good for the parents.

11:47 AM  
Blogger neonataldoc said...

This comment has been removed by the author.

11:48 AM  
Anonymous Anonymous said...

The mother who asked the question demonstrated a readiness to learn/hear, I believe. I, as a bedside nurse, would have seized this moment of readiness as an opportunity for honesty. Bugs reply might have triggered another question from the mom, which would have added up to a dialog, a give-and-take between bedside nurse and mother. A great beginning for dialog, no Babel!

I like the acknowledgement that we don't know an answer. I think we must acknowledge over and over that we don't know for sure . . . but that statistics and experience can make us into educated guessers.

I would have said (and do say) that every child takes something away from the NICU. That being premature and being in intensive care makes a child very much at-risk and vulnerable. I wait and see if the mother wants more info. She may ask---"Give me an example of what babies take away from the NICU." I then say that they may have respiratory issues ongoing--that they have vulnerable lungs now and into the future. That the network of blood vessels in their brains are fragile, very fragile, and that puts their brains at risk. (Waiting to see if the mother wants to hear more . . . and following her lead.) If the parents ask me something that is clearly NOT in my scope of practice as a nurse, I say: "Let's write down all your questions and make a date with the neonatologist to have a care conference with you. I will pass this on in report to the next nurse, and leave a written message for the doctor who admitted your baby ______ (name)."

I try to avoid talking about the equipment, the tubes and wires, monitors and drips, hooked up to the baby. I try to say, as if I was charged with introducing a star to center-stage: HERE IS YOUR BEAUTIFUL BABY GIRL/BOY. What is her/his name? We must put her name above the bedside . . . Etc. As someone suggested--acknowledging that this is the baby you've waited for and longed for, and this is basically, joyous.

When parents ask something tentatively, I say "It is your baby. You should have what you want for him/her" to show them they don't have to be tentative.
Conversely, I say that we WANT to run this test and do this blood work---reversing the role---I am asking tentatively to give them the idea that they are the parents, and it is the medical staff who should be asking them for permissions. It think it is pitiable when parents ask permission to have access to their baby, to hold him/her or change her diaper or take her out of the isolette.

If I have built a relationship with the parents/family, I may offer other, even more personal information, or examples of other preemies we've had in the unit (of course, no identifying information), or statistics. If I am going to say something that may scare a parent, I make sure I have enough time and backup to deal with the parents tears/fears/anger. If a parent leaves the bedside tearful, I call the post-partum nurse to suggest that when the mother returns to her room, that the RN taking care of her meet her and be available to talk and comfort her.

What do parents want? It is like asking "What do women want?" Tailor your answers to the individual. Go case-by-case. Younger nurses can sometimes have a better sense of what a younger mom wants/needs or how she will react. Older nurses have a sense of older moms. I, as an older person, sometimes feel I am mothering a very young newly delivered mother. My self-talk is that I need to find some way to identify with my patient---it is only then that I give personal and sincere service. I coach my students to do the same---even if they only notice and admire a hairstyle, find one thing to identify with---and you are magically more of an advocate, on the side of the patient, and thus, a much better nurse.
CAK

7:43 AM  
Anonymous Anonymous said...

Christina I think you brought up an excellent point. ICN (NICU) nurses do sometimes lapse into medical-babel.

Lord knows ours did. I spent all non-visiting hours and most nights sitting in an isle of the medical library in the Royal Brisbane reading back-issues of journals like Biology of the Neonate (or something like that)...with a medical dictionary next to me as well. I must have looked pathetic; a child trying to look like an adult med-student. But I needed information, on outcomes and possibilities, and procedures, and equipment, and on *what* they were talking about when they didn't have time to dumb it down for me.
I understood from the beginning that dumbing down these things is hard sometimes, especially with two nurses to 6 babies under 27 weeks.
I befriended a few of the other parents, and filled them in on what I'd learned...and it seemed to help a bit.

I think telling them, as someone else suggested, that all babies take something from the ICN is a brilliant idea. I wanted to hear that...I knew early on that there would be delays...but I found that out myself...no-one told me that. And I found out soon after that that if we escaped the developmental delays early on, we might face social, behavioural and academic difficulties later on.
I'm damn lucky I knew that (and Helen's book was instrumental in it, and in my coping now) because I'm facing social/behavioural problems with my daughter now that she has started school.

I think, even if it hurts, we parents need to know. Even the teenagers who've made 'the biggest mistake our our lives', we all deserve to know. To be told in the gentlest way possible, that catch up by preschool doesn't mean 'free of problems', and that 'hey he can walk' won't always lead to 'oh you have the neatest hand-writing, and look how well you've stacked those blocks'.

I think all NICU's around the world, all levels, need to stock a good supply of 'dumbed down' books on prematurity, medical jargon and procedures that these kids might face. And parent *need* to be able to read about the outcomes, good and bad. A single computer with access to the internet preemie groups, websites, and medical journals can be essential tools for parents. Waiting rooms with coffee and the latest Woman's Day just don't cut it anymore. It's the information age, and I think we deserve to know from the beginning, or as soon as we're ready, everything we need to equip up for the endless journey of raising our preemies.

Sas

6:31 PM  
Anonymous j.net said...

Well, the "He/she'll catch up by preschool" answer should never be used, not even for the babies who excel in the NICU. Eighteen years after I had premature twins, new preemie parents are still being told this by somebody, and they are all too willing to believe it. Then, a few years later when their child seems different, they search the internet and email lists for help and wonder if the symptoms might be secondary to prematurity. After all, whatever followup the baby received probably ended at age 2. Yet, the child could have been helped much earlier if only the parents had been prepared and if followup had continued. Most general practitioners and pediatricians don't seem to be aware of the longterm effects of very early birth, especially not in rural areas. I agree that care should be used when a parent first asks the question, but perhaps information could be available for parents to read when they are ready. Then they will be better educated to discuss the facts with the neonatologist. I'll be glad to write the booklet.

5:31 PM  

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