Denouement
A few posts ago I wrote about a baby with Trisomy 18. Perhaps you are wondering what happened to that baby.
At first the parents wanted everything done for the baby, including mechanical ventilation if necessary. When an echocardiogram showed the baby had serious heart defects that required major surgery, they wanted to go ahead with the surgery. The pediatric cardiologist and I each had long conversations with the parents, making sure they understood the poor prognosis of this child, even with surgery, and gently suggesting that maybe they didn't want to put the child through it.
They still wanted the surgery, so we transferred the baby to a center that does open heart surgery on newborns. After transfer and discussion with more physicians, they decided not to have the surgery. After hospice services were arranged, they took their baby home. Some people wondered who it was that finally talked them out of the surgery, but I don't think it's that. I think it just takes time for a family to come to the awful but appropriate decision to let their baby die.
I also have some follow up on a mostly unrelated matter, that of my traffic ticket. I went to court on the assigned day, and the officer said he would reduce the infraction from illegal lane usage to some lesser charge, so I wouldn't get any points on my record. The fine, though, remained the same, 130 big ones. I paid the fine and got out of there.
When baseball pitcher Cory Lidle died in a plane crash recently, I heard someone comment on TV that it put the Yankees' loss to the Tigers in the division playoffs in perspective. Similarly, the trisomy 18 baby puts my traffic ticket into perspective. The ticket is an irritation but just a small blip on the radar screen of life. Having a baby with trisomy 18, though, changes your entire view.
At first the parents wanted everything done for the baby, including mechanical ventilation if necessary. When an echocardiogram showed the baby had serious heart defects that required major surgery, they wanted to go ahead with the surgery. The pediatric cardiologist and I each had long conversations with the parents, making sure they understood the poor prognosis of this child, even with surgery, and gently suggesting that maybe they didn't want to put the child through it.
They still wanted the surgery, so we transferred the baby to a center that does open heart surgery on newborns. After transfer and discussion with more physicians, they decided not to have the surgery. After hospice services were arranged, they took their baby home. Some people wondered who it was that finally talked them out of the surgery, but I don't think it's that. I think it just takes time for a family to come to the awful but appropriate decision to let their baby die.
I also have some follow up on a mostly unrelated matter, that of my traffic ticket. I went to court on the assigned day, and the officer said he would reduce the infraction from illegal lane usage to some lesser charge, so I wouldn't get any points on my record. The fine, though, remained the same, 130 big ones. I paid the fine and got out of there.
When baseball pitcher Cory Lidle died in a plane crash recently, I heard someone comment on TV that it put the Yankees' loss to the Tigers in the division playoffs in perspective. Similarly, the trisomy 18 baby puts my traffic ticket into perspective. The ticket is an irritation but just a small blip on the radar screen of life. Having a baby with trisomy 18, though, changes your entire view.
posted by neonataldoc at 6:59 PM
18 Comments:
Neonatal Doc:
You are very right. Having a baby with trisomy 18, or losing a child forces you to change your perspective. When my son died, I didn't think I could go on. His twin gives me reason, along with their father (my darling husband).
I know what you must have to tell many parents of gravely ill children must weigh heavy on you. I really feel that you have a very special place in Heaven, by helping all of the children you have through the years.
Thank you for tending to these children, and helping those who cannot make it leave with dignity.
From the Mom of two micro-preemies.
Thanks for letting us know the outcome.
No offence to you Neonatal Doc, but it does take a while for us parents to actually get what we are being told. And your automatic reaction is that your child will be the exception, though of course they rarely are.
Losing a child does put everything else in perspective.
Very nice post.
Now forgive me while I trivialize what you said by telling a favorite story of mine about Phil Rizzuto (All-Star Yankee Shortstop and long-time broadcaster).
When Pope Paul died, Rizzuto said, on the air, that "that kind of puts a damper on even a Yankee win!"
best,
Flea
Neonatal Doc,
I couldn't agree more with your stance and your willingness to see that in some cases, setting a child free is the most humane option there is; however, reading this article and seeing your understanding in this situation makes me wonder how the same person could have posted that previous blog regarding parent's terminating a pregnancy for poor prenatal diagnosis?? (or in the article, specifically Spinal Bifida). Didn't you realize when you wrote that there are so many other reasons why parents would consider termination? T18, T13, Complete T22? In all cases these babies are "incompatible with life," and it seems someone who understands the suffering parents and their babies go through in times such as this would never have posted such an insensitive and judgemental comment as you did on the previous post. I do know the fundamental difference between the two is that one's prognosis is fatal and the severity of the others sometimes can't be determined, but regardless, your comment that parents don't want to be bothered with a disabled child is quite a huge leap. Please shed some light!
I always thought doctors were supposed to be non-judgemental and compassionate? This isn't to say you don't have your own set of beliefs, but when they conflict, do you refer your patient out? I hope so. I would hate for a patient of yours who is struggling to decide how severe her child's anomoly is to have to read your previous blog or hear that in your office.
I don't mean any disrespect, but my baby had an 'incompatible with life' diagnosis and my decision to terminate BEFORE she was born or died in utero was the most heart-wrenching decision of my life. I only ask you to consider that, had I never gotten the actual diagnosis, would my baby's obvious defects of no stomach, cleft lip and palate, IUGR, extra digits, low heart rate and several septal defects be enough for you to consider that in many cases, we will NEVER know the diagnosis, but still know what is best for us and our family? We just research and put our trust in our specialists and in God. Thank GOD my specialist was compassionate and non-judgemental.
Sometimes, when I read posts like this and some of the others, I feel very misunderstood. I remember reading a post a few days back when the general consensus was that new parents were filled with grief, couldn't make a good decision while under stress and that their need to spend time with their newborn took precendence over allowing that baby to die sooner and the baby had to suffer longer so the parents could say goodbye.
In this post, it's that you need to help, or make the parents understand, that the surgery isn't the best choice for that baby.
I don't disagree that this might be the case nor do I often disagree fundamentally with the decisions you make. What I think gets a little blurry or misunderstood, is that when you ask a parent to make these decisions, it's something different that crosses my mind.
If I were asked to make this decision, and no doubt I don't disagree with you, I would struggle the most with the fact that I agreed to let my child die and as his mother, I didn't stick up for my child to help him live longer. When I would look that baby in the eye, I would feel like a hypocrite saying I love that baby and then agreeing to let him die. I would forever be haunted with the fact that I would consider myself to be a terrible mother to allow him to die. I would probably never get over it.
There are times when it is appropriate to say that we need to let infants/children/people die with dignity and not put them through any more suffering. It is a whole separate thing to actually be able to agree to that. I think sometimes many people who read this blog, miss that point. These are not easy decisions and they weigh heavily on us parents.
I can't speak for any other parents but we have grown up with the impression that we should try to save everyone, especially helpless infants. I don't envy these parents or any other but I do hope that people have a little more compassion towards these parents in the future.
Oh, I forgot to mention, good news on the traffic ticket.
Neonatal Doc:
I agree COMPLETELY with the (first) anonymous poster's comments. I ended my daughter's pregnancy when she was diagnosed with T18 during the second trimester, and given when I found out, I feel that was the most merciful and ethical action to take. Not for me, but for my child. Similarly, if I had found out the diagnosis later in the pregnancy when termination was not an option,then I'd have carried her to term but not allowed extreme measures for her care.
Why one of those actions is considered evil by many and the other is considered sad but best, I just do not understand.
He NeoDoc, I am back. Thanks for noticing. Tough crowd and topic here today.
Good luck.
dream mom-
I agree with you that those who have not personally faced such heartwrenching life and death decisions on behalf of their child, need to be very careful about passsing judgment. What I would also hope though, is that those of us parents who have faced the unthinkable, would also be gentle with one another no matter which decisions we ultimately made.
I completely understand the desire, and even primal instinct, to fight for your child's life no matter what the cost. I feel nothing but compassion and understanding for those parents who continue to pursue aggressive intervention even when it may seem to fall outside the bounds of reason. I do understand how strong the need can be to keep fighting, keep holding on, keep hoping. And of course the reality is, that there are miracle stories and every parent hopes their child will be that miracle.
But on the other side, I would hope those same parents would offer me the same compassion and understanding for our decision not to pursue "heroic measures" for our extremely premature babies. (I hate the term heroic measures. I guess that makes our decision to let go anti-heroic) I would hope that they do understand that while our decision will never be easy to live with, my heart continually tells me it was the right one. Every maternal instinct in me wanted nothing more than to believe our babies had a chance at life, but when I was lying in that hospital bed those same instincts kept telling me it just wasn't so. They were too small, they were too weak, they were too early. You are right, there is nothing easy about choosing to let go... it is in fact, the most awful decision in the world, but sometimes it is the right one. And in the end, whether parents choose to continue to reach for the miracle, or say goodbye to their miracle, they all deserve our compassion.
Thanks dream mom for your insight.
One other thought: I would encourage readers of this Blog to check out an amazing website www.soulumination.org
Soulumination is a small Seattle foundation started by a well-known photographer who has spent the past 5+ years offering her photographic talents to families with children facing life threatening conditions and illnesses completely free of charge. Her work puts a face on some of the conditions that are discussed here, and helps you to see how much joy and beauty every child brings to the world no matter how brief their lives may be. The photographs are beautiful and deeply moving.
Dream Mom,
I think I would have felt the same way as you if I had not been put in the position. I think you are right - there IS a need to stick up for your child - to protect your baby and fight for his or her life. But for me, there was a greater need to shield her from suffering. And those two options couldn't exist at the same time. When you know your child, if she does live, will only live moments, will be in pain, will need several immediate surgeries, sometimes the need to shelter her from those overrides MY need to fight for her life. Me keeping her alove and subjecting her to that would have been selfish. There are so many factors and details that weigh into the equation and that is why I hesitate (and this is the first time) to ever even engage in this discussion in a public forum. People just can't even know...I see people referring to terminations in thier posts for "extra digits" or "cleft palates." What they probably don't realize is that several defects such as those most often indicate chromosomal snydromes. Or do they know that we think about when our babies central nervous system begins developing? Or whether or not we will carry to term, only to have the baby die in utero and in some states, that is the ONLY way that we can get medical attention in a hosiptal after a certain gestational age. There are so many factors that it is impossible to say, "This is what I would do...." Unfortunately, whatever I THOUGHT I would do, couldn't happen. My state laws, my baby's gestatational age, my ncreasing blood pressure all contribue to where we have to go, how we have our care and what our decision is. This is a topic no woman or man should ever have to decide. And yet I did have to decide the fate of my child even though God had already decided FOR her. And on top of that, we are discussed in politics.
I am off subject, but I just want people to tread very carefully here. It isn't black and white and it isn't easy, whatever your options are.
I couldn't agree more with your stance and your willingness to see that in some cases, setting a child free is the most humane option there is; however, reading this article and seeing your understanding in this situation makes me wonder how the same person could have posted that previous blog regarding parent's terminating a pregnancy for poor prenatal diagnosis??
I think it comes down to two things, if I might?
1)allowing a child to die a natural death as a result of a genetic or medical condition is one thing, it is Nature's way and it is not a burden on the parents. Aborting that same child is taking matters into our own hands, and that leaves us open to mistakes or judgements as we try to find our own lines in the sand.
2)"incompatible with life" is subjective, as is your list of who is deemed "incompatible with life." Dont believe me? Go read the message boards of the many children whose lives were deemed incompatible who are living their natural lives out in families that are grateful for whatever time is theirs.
http://www.trisomy.org/common_problems.php?sec=8
The site is full of stories and pictures of a hundred children that are very MUCH alive. It is not families who objectively discuss the value of their lives, they are too busy living them.
Whether or not you think their lives are valuable is not the question, THEY think they are. And they should be the ones to know, as they live it. Probably not easily, but fully, lovingly, joyfully.
http://www.trisomy.info/photos/albums/userpics/normal_7193490-R1-043-20.jpg
The difference really is, WHO decides? God, or you? And if you dont believe in God, Mother nature. Whatever, but faith means allowing things to happen in their own time, for their own reasons.
Some would say my child, who has T21, is suffering, should not have been born. She has required no specialized care. Is Mother Nature telling us to let this one pass through the net of "good enough, strong enough, ok enough"? The next in line, who runs a little slower or looks a little "funnier", do they get chosen to be "terminated"? It is subjective, it is variable, it is NOT OUR CALL.
If a baby is born with a lethal defect and dies as a result, wishing that the parents would not put them through a lot of surgeries that will absolutely not make a difference is really arguing for the dignity of that child, and the comfort of its family. It is allowing the child the dignity of the time it was meant to have here. As ND has noted, it is for the parents to decide, after the baby is born and it has at least gotten a fighting chance, how far they want to go in trying to keep the child alive. If there was a chance, I would fight to keep my child alive. If there was no hope, or if the child would suffer, I would be inclined, as much as it hurt, to let that child go. "Letting him go" is very different than "Terminating him."
to the anon above me, I didnt see your post before I sent mine, or I would have responded specifically. I just wanted to say that I am sorry for your pain. I really am. I do recognize that SOME cases will truly hurt the baby, and the baby will suffer. Those cases baffle me, I dont know the answer. The cases I am talking about are NOT cases like yours. In several instances I know of, babies WERE aborted JUST for cleft lip, JUST for extra digits, JUST for being boys. Sad, but true. Abortion has come to mean any child, at any gestation, for any reason. If true cases of suffering were the only cases we were discussing, if yours was the norm, instead of abortions for VERY survivable birth defects, this discussion would never be had the way it is now. Sadly, you get painted right into the picture of abortion on demand, when honestly, you deserve better than that.
Lori- I think you and I are on the same page. To clarify, my point wasn’t whether or not parents should or shouldn’t pursue “heroic measures” as you call it; my point was to explain my perspective on the difficulty in agreeing to stop aggressive treatment, which has nothing to do with a person’s ability to “understand” why aggressive treatment would be futile or cause additional suffering for the infant. I had hoped I had made that clear. Anon 457-Hopefully, this cleared this up for you as well.
dream mom-
I agree that we are on the same page. We are both advocating for compassion for all parents facing unthinkable decsions. You are right that even if a parent "understands" the futility of continuing aggressive intervention, it is unbelievably painful to have to be the one to finally say, enough. No parent should have to feel as though they participated in allowing their child's death, but sadly many have to live with that very burden.
You have lovely insight- thank you for sharing.
Thanks for the update. I made the unpopular suggestion on that previous post about giving the parents some time. I do believe MOST parents MOST of the time, don't want their child to suffer needlessly. I'm sure they'll treasure that time they did have with their baby.
Just considering the other comments and I don't know how to phrase it without being accused of being heartless but for babies or children who are dealing with pain, perhaps who have not known life without some pain, why is it so important to take steps to stop life giving treatments simply because they are painful and the child has a poor prognosis. It's probably easy at the extreme end of the pain continuum to know 'when' but there's a whole period of time BEFORE that. Is it really we're concerned with the pain the baby/child feels, or our own uncomfortableness with it? Makes me wonder about those living with disabling conditions. Like Dream Mom, I'd have trouble knowing when to stop treatment. But it's not about me, or me being selfish, it's about me being expected to have the final say on whether this baby/child lives or dies. All that baby/child has is its 'life' whether it's painful or not. I can understand where Dream Mom is coming from, and she says it very eloquently. Sorry rambling on here, trying to make sense of my own thoughts on the subject. This is not a criticism of how anyone else handles this situation. I belive it's deeply personal.
Ex utero, you're right, it can be a tough crowd, but then, it's a tough issue. And Flea, you can't help but chuckle at Rizzuto's comment.
Dream mom, I agree. I posted many months ago about the problem of making parents be the ones to say "It's okay to let my baby die". But I don't know another way.
Anonymous 9:14, I don't know if there is time to fully answer your comment. In that earlier post I was just saying that sometimes when parents say they are aborting a child because they don't want it to suffer, what they really are feeling is that they don't want to have to take care of a special needs child. That may sound harsh and judgemental, but don't you think it's true, at least in some cases? Also, as far as being non-judgemental, what I say on my blog isn't necessarily the same thing I say out loud in the presence of a family. Even when we're non-judgemental on the outside, we can't help but have our private opinions inside.
I do have empathy for parents put in these difficult positions, regardless of the decision they make.
Neonatal Doc,
well, thanks for clarifying. I don't know if parents ever terminate becuase they don't want a special needs child? I suppose you are right in some cases...it is hard for me to think that way feeling what I do and what I have lost, but I guess in our crazy world it must exist. I also think though that in my own mind I tend to differentiate between a "special needs" child and a child with severe chromosomal anomolies...Maybe I shouldn't but are we talking about different things here? I work with lots of special needs children and that isn't what enters my mind when I contemplate tx for PPD...(I think of lethal dwarfism, or Trisomy, etc. - perhaps ones that are not fatal, but extremely severe and that affect quality of life) in any case, I think that is a whole different topic, one I don't even enter into discussing becuase I have not walked in those shoes and don't feel qualified to comment on what others think or feel and the decisions they and thier family's make. (Although I already know that will open up a debate as to how we know the severity of the defect, how it is subjective ,etc....)
Michelle - I would argue with you about carrying to term and the burdens it places on parents (aside from the buden it places on our babies). I know that for our family, the psychological trauma of carrying my baby to term was not something I Could handle and I spent weeks trying to do just that. In the end it comes down to what your options are and the fact that all of the options are horrible, we end up doing what my husband and I feel is right for our family. People can come up various arguments for that, I am sure, but it is my life and not thiers and they are not having to risk their health, their marriage, the psychological state - I am. As far as 'incombatiblity of life," in my case, I disagree. When you look at your baby's ultrasound and see no brain, or no stomach or no skull, you know. I know there are miracles. I also know that I, like most other families, frantically search for answers, meet with specialists and genetics counselors. We don't make our decision blindly. I know that perhaps my baby would have survived labor and delivery and perhaps would have lived a few minutes or hours...perhaps. Did I want her to? No. There are so many opportunities before delivery and after for her to feel pain and I belive I did what was right in my heart. This isn't to say others don't feel differently.
Although it initially felt good to write about it, I find that I have to very carefully word my sentences becuase I think that everything I feel and then say is open for comment (obviously - it is a public board.) It seems that for every statement there is a counter statement...I know we are all passionate about what we belive but I for one, am so thankful I had the choice. And in my heart I belive that God gave me the information I needed in order to make this decision for her. As mothers we make decisions for our children in thier best interest becuase they might not be able to. That is how I view my decision.
Yes, we are all lumped into the same category - women who have had abortions. Regardless of the health of our angels, the diagnosis, the harm to the mother...that is exactly why I have previously found myself so defensive and hesitant to ever even engage in discussions about this topic. There is so much that people don't think about and so many of these particulars never enter into the debate. That is why I am staunchly pro-choice. I don't advocate for abortion, I advocate for my right to make my own decisions.
I think I am done writing about this here. It ceases to be therapuetic for me. But thank you all for your insight.
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