Wednesday, October 04, 2006

Eighteen II

The baby had the typical features of trisomy 18: small mouth, clenched hands, narrow, tight hips, abnormal ears and feet, and so on. She would likely have the same natural course of babies with trisomy 18 if we did not intervene; 50% of them die within the first week of life, 90 to 95% die by age one year, with the survivors being severely mentally defective.

I had spoken to this mother prenatally about a month earlier, after her baby had been diagnosed by amniocentesis with trisomy 18. At that time she said she wanted everything done for the baby. Tonight, after the baby was born and they had a chance to hold the baby for a good while and see her, I talked to mother and father again. After congratulating them and telling them the baby was cute (because she was) and inquiring of the baby's name, I told them the baby unquestionably had trisomy 18. I told them the grim statistics about trisomy 18 and that many of these babies simply stop breathing and pass away. We discussed what they wanted done should that occur, and mother emphatically said she wanted everything done, including intubation and mechanical ventilation, including an IV if needed for hypoglycemia.

When she said that, I just felt very tired, and not only because it was 2 a.m. I was tired of having to discuss this with parents; I was tired of the parents trying to disbelieve the truth about their baby, tired of them not wanting to deal with the hard questions, tired of them not seeing my point of view, which is that we should allow nature to take its course in these situations. I've seen babies with trisomy 18 before, and I've seen many babies on mechanical ventilation, and I just don't think the two should go together. Why put an innocent child like this through needle sticks, IV starts, the trauma of having a tube rammed down their throat when it's not going to make much difference?

I know this probably sounds terrible, to complain of being tired at a time like this. I know it's not about me, it's about the baby and her family. I know the baby is a human being, and because of that we shouldn't take letting her die lightly. But I also know I've seen this picture before and have gone through the ethical and moral questions in my mind many times, while the parents are doing so - or maybe not doing so - for the first time.

The father said to me, "It's in your hands." Ah, if only that were true.

P.S. I wrote the above at about 3 a.m., right after talking with the parents. As I read it now in the light of day, I realize it might sound a little harsh. Don't worry, we did the right thing and are treating the family and child with dignity and respect. I also should say that I respect the opinions and rights of those parents who have done everything for their trisomy 18 kids, including heart surgery; their pictures and stories of the kids as they grow give me pause. But I guess I just want to share how it looks from our side sometimes.

32 Comments:

Blogger Laura said...

you wrote: "I wrote the above at about 3 a.m., right after talking with the parents. As I read it now in the light of day, I realize it might sound a little harsh. Don't worry, we did the right thing and are treating the family and child with dignity and respect."

I have no doubt that you did. It can be so hard for us sometimes supporting families who just don't hear what we are telling them when the prognosis is not positive and sometimes we just have to vent as harsh as it might seem in the light of day. I'm afraid we would go crazy of we didn't.
This past year I have cared for 5 trisomy 18 babies. I seriously wonder what is in the water around here! One family just could not and would not accept the inevitable prognosis and insisted on everything to be done for their babe too. It was so hard on us all as staff because all we could see was us torturing a beautiful baby (she was beautiful too).
It took longer than we wanted or thought appropriate, but mama eventually accepted her baby as she was and learned how to tube feed her and took her home. She passed away 2 weeks later at home in her mama's arms.

5:22 PM  
Blogger Kelley said...

I hate it that this sort of thing happens to babies. I can't imagine that situation so I could never judge any parent's decision. While I would never abort, I can't say I wouldn't let nature take it's course on this one. Trisomy 18 is devastating. **And yes, I agree their lives are worthwhile, that's not at all what I am saying. Just my humble opinion on what I would do in such a situation. And all of the T18 babies I have seen are indeed beautiful, as well.

5:46 PM  
Anonymous Anonymous said...

Does insurance cover doing everything you can for a baby who is not expected to live? Just curious -- never been in the situation.

7:19 PM  
Blogger AtYourCervix said...

I had mom with PPROM and a suspected trisomy 18 baby about a year ago. I had her delivery, and it was very obvious by looking at the baby he had trisomy 18. Chromosomes verified it.

However, these parents were of a unique religious belief (an offshoot of Christianity) and were very passive about decisions on baby's care after birth. They would not make any decisions at all. It was frustrating. They basically left it into the NICU doc's hands to decide what to do, pending chromosome results after delivery.

Baby ended up receiving respiratory support at birth, but did not need intubation immediately. I believe he eventually did need intubated (I can't recall exactly since I work the L&D end of things).

After chromosomes came back confirming trisomy 18, the parents did finally agree to terminate all supportive measures, and brought baby home. He did not survive but for a day or so after that.

So sad.

8:43 PM  
Blogger michelle said...

As I read it now in the light of day, I realize it might sound a little harsh.

I dont think it sounds harsh. I think you sound tired and drained and a little sad. I can only imagine what it is like to live this day in and day out. I also think the fact that you care how you sound speaks volumes about you. You're ok, Doc.

10:08 PM  
Anonymous Ariella said...

It didn't sound harsh. It sounded honest and intelligent. There ARE some lives worth saving, and I know I'm going to open a shitstorm by saying this, but if someone has no future other than severe mental retardation, I just don't see the point in providing lifesaving measures like feeding tubes and ventilators.

Please note, for those sensitive to this, I am not saying this about a child diagnosed with Downs or similar.

11:12 PM  
Anonymous Roxanne said...

Poor baby. What does she feel with all of these medical heroics? Is that fair to her? I can't see that it is, given her short and grim future.

I agree with the person who mentioned the mental retardation aspect. What a sad shame for any child no matter what diagnosis.

I hope she is able to pass away without hurting whenever the medicines no longer work and her artificially prolonged life comes to its eventual end.

12:00 AM  
Blogger Lori said...

There is an excellent book by Deborah Davis Ph.D. titled "Loving and Letting Go" that is written specifically for parents who choose to turn away from aggressive medical intervention in the belief that it will ultimately only prolong their child's suffering. It is a shame there aren't more books like it that validate that sometimes the most loving parental choice, is to let go. I say this as a mother who held two babies in her arms as they quietly let go of life. I know all too well, that these are painful, life defining choices.

I think Deborah Davis says it beautifully:
"Another expression of parental devotion is accepting the child for the very one she or he is. In essence, letting nature take its course is an act of total acceptance- of the child's strengths and weaknesses, beauty and imperfections, potential and fate. This isn't to say that parents shouldn't opt for medical intervention if it offers their baby health and wholeness. But if a baby's problems are beyond medicine's reach, then refusing intervention says, 'You are precious and I accept the way you are, body and soul. I decline to try to mold you into someone else."

1:13 AM  
Anonymous Anonymous said...

The flip side of the coin (if there is one) is that sometimes it is refreshing to see parents who love and care for their babies, even when they actually DO understand the implications of their chromosomal abnormality, and who want to do what is best for the baby. It is a stark contrast to those parents I see regularly who consider their trisomy 18 bub to be something less than human, and want to be rid of it... a response they would never have to a baby with a normal amnio. Yes, it's a heartache, but I struggle to understand that they are any less human or any less lovable, despite their poor prognosis.
I agree with you though, and don't think you sound harsh - the reality of the situation must be embraced, but I can understand why it takes parents a while to get their head around it... after so much hope and excitement, the denial of grief is fair enough.
Good on you for your work and the inspiration that you are.

1:18 AM  
Blogger Marcia said...

It didn't sound harsh at all; it sounded like the weariness of someone who cares.

Trisomy 18 babes are just sad all around. It's heartbreaking.

7:25 AM  
Blogger jennifer said...

You answered your own question, in a way, Doc. You've had an entire professional life to decide how you feel about such situations; these parents have had nine months at best. So they are finding their way with it, and you are experiencing this process over and over. It must be very difficult.

But thank you for the post. The OP, and the comments, were very heartening to me. I often felt that no one in the NICU cared that these were human souls we were handling (more than just bodies that were broken or in need of aid), and your words, and the words of some of the commenters, showed me otherwise. I appreciate that perspective. Please don't lose that human side, and there's no need to apologize for it, at least to me!

10:10 AM  
Anonymous Anonymous said...

Why put an innocent child like this through needle sticks, IV starts, the trauma of having a tube rammed down their throat when it's not going to make much difference?


Exactly! That is why some women choose to terminate after receiving a poor prenatal diagnosis. Im not talking specifically about those who terminate for Down syndrome. But those who terminate for other serious and life threatening conditions. If you have a baby with a serious structural or chromosomal defect, and the chance of any heroic medical interventions making any difference at all is very slim, then what is so terrible about deciding to let the baby go early? Either way the baby is going to pass.
Im not trying to start another abortion debate here. Really Im not. Im just trying to point out that the thought process that I quoted above from the doc is the exact same as the thought process for some who choose to terminate for poor prenatal diagnoses. Just some food for thought.

10:38 AM  
Blogger Kristina said...

Doc,

This *is* about you. It's ONLY about you. That is why you are their doctor. :) As a doula, seeing women choose things that sometimes lead to 'harm' later, and having only the power to say, "I support you.", I have learned to surrender to the forces for which there is no simple name; divinity? god? fate?

You can't know the path that will come before these parents. You can only *show up* with respect, and with trust that things are as they should be. They ARE as they should be. :)

These babies bless these families for their own reasons, too. The parents are doing what they must to *survive the pain*, because if they do not do 'everything' then they will live with crushing guilt for the rest of their lives. Society tells us that letting someone, especially a baby, die, is one of the most brutal and terrible things we can do. You can't deprogram that out of parents in a few minutes of discussion. These parents are looking for rescue, for a lifeline, and you offer by proxy the gift of technology and the possibility of being saved from this dark, dark journey they know is ahead but will do absolutely anything to avoid. People don't like pain - we would epidural our emotions if we could (and many do) in order to not feel it even if it means not feeling anything else. These parents have to go home at the end of the day and face the questions of their family members, and their friends, and eventually strangers who discover that they had a child who died. It reminds me of the OB/GYN adage about never being sued for the cesarean that you DID. You can't be reproached when you did everything that the doctors/hospital/medicine/technology ahad to offer. At the end of the day, these babies are born and their parents love them more intensely than they probably imagined they would, and they are desperate to hang on to it. It comes at the sacrifices made by the babies, but the intention is love.

And you can't know where the parents will go from here. You can't know what this injection of your presence in their lives will bring later on- so trust that there is a purpose for all things, and that no moment is wasted. These babies and their parents are gifts, mirrors and reminders for you. :)

Why are you here, doing this work? What brings you to show up every day? What made you love it so much that you decided to do it? Are those things still true?

If you live in the "should" world, you won't ever be in the world that IS. Trust the parents to choose wisely for themselves and their babies, even if it is not what you would choose. That is the blessing of free will. :)

11:52 AM  
Anonymous Anonymous said...

Harsh, no. Realistic, yes. Parents don't realize the pain/torture they are inflicting when they say 'do everything you can' to a 23 weeker or a full termer with incompatible abnormality. Have you seen narof.org? I wish more parents would have seen it before they were asked about intervention. Sometimes doing nothing but pain management is the most loving act a parent or physician can perform.

11:57 AM  
Blogger Lori said...

No one can prepare you for the devastation and feeling of utter helplessness when you learn that the child you have already given your heart to will almost certainly not survive infancy, and perhaps will not even survive a day. Acceptance does not come easily when you are faced with the unimaginable, and I am sure that for some parents choosing medical heroics gives them the time they need to find their way.

I will say though that while the loss of an infant brings immeasurable grief, in time you are still able to see the enormous blessing and impact that child has had on your life. A "life at all costs" mentality pervades our society, and that the only life worth living is a long, healthy one. My babies have taught me the shortsightedness of such thinking. Their lives were brief but they continue to have great purpose. I pray that these parents will be able to see that the value of their daughter's life is not measured in days, and that there can be tremendous healing found in making conscious, parental choices to help your child let go of life peacefully. You really can love and let go at the same time... and the love will remain.

1:24 PM  
Anonymous Christina said...

Nice post neonatal doc. As a PICU nurse I see these Trisomy 18 children and others like them when they come back sick to the hospital over and over and over again, and I can identify with your feelings of tiredness and frustration towards some families who continually want everything to be done even when everything is clearly only invasive and ineffective.

I do sometimes think about a family I encountered in nursing school when I was doing a rotation in a NICU. It is a different situation, as their child was genetically normal, but suffered very severe brain injury during birth when a vaccum extractor was used with excessive force in a difficult labor. The parents were advised to withdraw support and they did so. (They were both in the medical field so perhaps this made a difference in terms of their willingness.) They had a memory book made for them in the NICU and they were allowed to take the baby home, and they were told he would die within a day or so.

They grieved, took him to the beach, had a little ceremony and told him he could feel free to leave them. But the catch was that he didn't- each day he lived and became more interactive, more like a regular baby. After a couple days mom started realizing she needed to seek special services for him to help him develop as fully as possible rather than plan his funeral.

Obviously a different case than a devastating chromosomal defect. But it is a reminder that allowing nature to take its course does not always mean death. One wonders if perhaps the lack of interventions in this case allowed this baby's brain to heal more easily than had they kept him vented, placed a gtube, put him through numerous treatments, tests, etc, etc. It's a reminder that medical science still works on the edge of mystery more often than we sometimes realize.

I read somewhere once that people willing to withdraw support of their children in futile cases tend to be more highly educated than those who want everything done. Have you found this to be true within your practice?

5:14 PM  
Blogger michelle said...

narof.org has an interesting article regarding pain in neonates. Very premature children are proven to feel pain perhaps moreso than adults. Makes you wonder what abortion in late term pregnancies must be like. I am interested in NDs take on pain perception in preemies.

5:40 PM  
Blogger Fat Doctor said...

Your honesty is refreshing.

6:53 PM  
Anonymous Anonymous said...

"Why put an innocent child like this through needle sticks, IV starts, the trauma of having a tube rammed down their throat when it's not going to make much difference?"

Isn't this is what most NICU babies endure? Not nice, but still the baby lives a while longer. It obviously does make a difference to those parents at that point in time - maybe they need longer to process it. You have the wisdom of experience. If they'd have seen the outcomes you've seen, they could probably make the decision easier too.

If the baby is going to die, let them have some time together. I can't imagine many parents would want to prolong it when they see it become too painful for their baby.

I think your vent is reasonable and understandable.

8:31 PM  
Blogger neonataldoc said...

Thanks, everyone, for the very interesting comments. I'm sorry I can't respond to each of them. I think everyone agrees that this is a tough time for the parents, so we shouldn't be too hard on them regardless of their decision. Also, we can speculate about what we would do, but we won't know for sure because when it's your own child, you might think differently.

Anonymous 7:19, I've never heard of insurance turning down treatment because the child was too hopeless.

Kristina, good point about the parents having to face everyone - their neighbors, etc.

9:12 PM  
Anonymous Anonymous said...

To Anon 8:31:

To prolong life just so the parents can have more time with the baby seems very selfish to me. If there is no hope, and the baby only has to endure more suffering to make the parents feel better, that seems very cruel toward the baby to me.

Sounds like folks who are in denial may have a hard time seeing this. That is just sad. Hopefully I am wrong.

8:54 AM  
Anonymous A. said...

Anon-
Unless you have been in their shoes, how can you say it's selfish? When someone is out of their mind with grief- They are just that-Out of their mind.
Noone but noone knows what they would do in that situation unless they are there.
I know a little girl who is confined to a wheelchair, and is the severe mental retardation people talk about- She holds her mother's hand, and the two of them are in love with each other.
I think Neonatal Doc is right on...
But some of these comments come from schmucks...

12:57 PM  
Anonymous Anonymous said...

Being in someone else's shoes goes both ways. Try to remember that.

2:23 PM  
Anonymous Anonymous said...

i read a profound article once entitled, "A Time to be Born is Sometimes the Time to Die."

The bookends of life remind me of sunrise and sunset. Interesting enough if one studies them, the sunrise is much quicker than sunset - but the sunset is much richer and deeper in colors. If one were to ask which one would be preferred: Sunrise or Sunset - most likely the answer would be sunset. The sunset of life can be as glorious and celebrative - if we will just allow it to be as it is sometimes suppose to be.

10:44 PM  
Blogger Rikita said...

As the mother of twins born a day short of 25 weeks, I can perhaps offer some perspective on the parents' point of view when thrust unexpectedly into this situation. I am not someone who believes in "life at any cost." I think it is tragic to bring massive medical technology to save or extend the life of someone who will have a poor quality of life (and by poor quality of life I am not talking about someone with Down syndrome or physical handicaps -- obviously, a person can have a good and happy life with those. I mean extreme situations). Even so, unless the doctors had told me there was absolutely zero chance for a decent outcome, I would have said, "Try to save them." Why? Because I did not want to deal with the guilt of having felt I killed my babies. Although the doctors tried to tell me I hadn't caused the premature labor, I was sure I had done something to cause it. In the trauma after the premature birth, I felt I would have done anything, carried any cross, not to have to plan their funeral, even if it meant I had to take care of profoundly disabled children for the rest of my life. And in the four months or so following their birth I almost lost my mind. From all the frightening things I read about preemies (hello, Helen Harrison) I feared a horrible future, even though the doctors did not give me a reason to believe that would happen. I did not want them to die, of course, but I felt I had done something wrong in having used IVF to conceive them, and this fear of the future, this way of seeing my babies as lives who were not meant to be, meant that it was three or four months -- when they started smiling and responding -- before I could really bond with and love them, I'm ashamed to say.

Fortunately, my boys did well enough from the start that the neonatologists never had to give us "the talk" about whether to stop treatment. And they are 18 months old and thriving now, and they are so smart and funny and loving that every day I am joyful, thankful, and humbled that they lived. Every day I metaphorically knock wood -- why did I have a good outcome when so many others didn't? I don't deserve it more than they. There is no reason for it. All I can do is be profoundly grateful to neonatal science.

12:54 AM  
Anonymous Another Mom said...

Reading this post made me sad and weary, too. I'm at the other end of the spectrum: A parent who opted to end my trisomy 18 baby's pregnancy at 16 weeks gestation. And it strikes me as a cruel hypocrisy that I am sometimes considered selfish and immoral for my choice while supposedly religious people like these get a free pass on negative judgment from society for making choices that are easy on them but hard on the actual baby. Aren't ethical parents supposed to make hard decisions based on their child's welfare? How exactly does prolonging suffering in this scenario really "honor life" more than what I did does?

I think I loved my lost baby at least as much as these people love theirs. I certainly think of her every day and wish it could have been different. But unlike these parents, I didn't put my head in the sand, I didn't react passively to the news of the T18, and I didn't shirk responsibility for what happened next. I considered all the possibilities and in the end, the main thing that pushed me toward the abortion was the knowledge that it was more merciful to end things sooner rather than later, given the T18. It really did seem like the least unkind thing among a monstrously unkind list of possibilities.

So people can call me many things. But I don't think SELFISH applies here. Not in contrast to these other parents, anyhow.

5:30 PM  
Anonymous Anonymous said...

Just a thought from one mother who just had a positive screen for trisomy 18, awaiting results of amnio. How about letting the parents make the hard decisions, after you've given them the facts, and do your best job to follow their wishes, and leave the rest to God. I agree it must be hard for you to watch THEIR children suffer, but that is a choice you made when you chose your profession. Maybe it's time for a transfer out of pediatrics doc, try something less stressful! Also, it seems alot of folks, are irritated with parents who don't choose termination, how about this? Judge them, after you've walked the road and realize that every person, does not share the same view, that what makes our country a great place. Who are you people to judge the quality of anothers life, leave that to their loved ones, and try to do your jobs the best you can!

5:07 PM  
Anonymous Anonymous said...

I would not condemn parents for either choice they've made, as it's a decision I certainly hope I never have to make. Abortion of course is probably easier for all the people involved but the parents, as the others are not the ones who are forced to play God. The parents on the other hand, are forced to play God, and are probably not terribly comfortable being forced into that position. I do feel sorry for the doctor forced to watch these children, but as the person above me stated he chose his line of work. Maybe he should feel honored to be allowed to be in these little angels lives while they are here! All of my sympathy goes out to the parents who obviously will be ridiculed by either choice they make. Either they are ridiculed for choosing life, and leaving it in Gods hands, or ridiculed for choosing abortion (which to those choosing it probably seems more humane to the children). I think that the statistics say it all, most of these children die before birth, but there are a select few who make it a year or two, some even further, and I don't feel like I am in any position to choose for anyone else whether they should live or die. Doesn't the will of the child to live count for anything? If these babies survive until birth, doesn't their will to live say anything about them? Even in their weakened tiny bodies, they struggle to live, and shouldnt' we feel some responsibility for providing them the medical treatments they need when their will to live is obviousy so strong. I feel the decisions for these children should be in the parents hands, and the doctors should do their best to honor parents wishes, and do what is right for the parents(who have the best interest of their children in their hearts and minds).

These families do hear what the medical staff is saying to them, and do their best to make good decisions that they can live with the rest of their lives.

I think doc should take a vacation, and step back for a little while. Death and suffering are a sure thing when you have life, and for someone choosing medicine for a profession, I'm startled to see that he seems to think that he is a better judge of what is right than these parents, who created, and carried these babies. Possibly doc ought to consider some counseling of his own to deal with his own feelings. If he had to come vent here, you can be sure, some of these families can sense his disgust with them, and that must be really horrific for them, already dealing with a certain death of their infants.

12:54 PM  
Anonymous trisomy dad and doc said...

I am in the position of being a physician (anesthesiologist) and father of a trisomy 18 fetus. After much heart wrenching discussion and with full knowledge of the poor prognosis of trisomy 18 (and in particular our child who was male and with a very poor ultrasound at 11 weeks), my wife and I decided to proceed with abortion. We were quite shocked when 6 months later our insurance company denied the claim saying they didn't cover "elective" abortions. This has hurt my wife deeply and enraged me. It's just another case of the insurance companies coming between the physicians and their patients. Has anyone else had this issue? I have already appealed the decision and been denied by a family practice doctor who doesn't even practice medicine and works for the insurance company. I am considering legal action, perhaps in the form of a class action law suit. Sorry if this is a little off topic compared to what everyone else said. I just can't believe that the bean counters at the insurance companies wouldn't actually prefer termination versus carrying to term with all the possible maternal complications and then with the delivery and NICU bills on top of that.

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