At what price life?

This is going to be a contentious post.  I have been thinking about this a lot lately. 

(after writing it, I have come back to say it gets sad, so be warned, I meant it as a discussion, it has ended up being a reflection of the past)

In the literature I have read, it says that although the number of premature births have not increased that significantly in the last few years, what has increased is the standard and quality of neonatal care.  Where as years ago babies born at 23w / 24w would have surely died, today excellent medical care gives life to those tiny babies.

But at what price?

The literature continues to say increasing these babies are ‘saved’ only to face a life of permanent disabilities, mental and physical retardation.  The authors question these early aggressive interventions and say we should look more at the consequences of saving these babies, what it means for their future.

And yet, in the beginning, you don’t know what the outcome will be, and you will do any thing in your power to give your child a chance at life.  You don’t know if your baby will have a good life, or a painful life.

I have read of two stories recently where babies born very prematurely are now still in the NICU, 11 months later.  The dr’s have taken the case to court and requested that no more resuscitation attempts be made if the child stops breathing.  In the one case that I remember more clearly, the child is blind, deaf, in constant pain and can only live on life support.  The parents are fighting the request saying that the child should be resuscitated if she should stop breathing again.  They want to keep her alive.

But again, at what price?

Is this life?  Is life on permanent life support any kind of life at all?  Or do we do every thing in our power to protect life, no matter how fragile that life is?

It is such a heart breaking, and deeply personal thing.  The parents of this little girl love her dearly.  And yet, in my mind, can one call this ‘life’?

It is difficult to say what you would do in that situation, because when faced with the reality of the situation you might feel differently.

With Ben, we faced a similar decision.  A decision no parent should ever have to make, to decide whether to allow your child to die or continue with ‘life’.  After Ben’s second brain hemorrhage, around 8 days old, the Dr told us, after many tests, that Ben was basically brain dead; alive only because of the life support he was on.  We could either let him carry on on life support, which meant he could die tomorrow, next week, next month, or we could make the decision to switch the machines off that day.  Life or death. 

What a terrible, horrible thing to hear, to have to go through.  Marko and I sobbed and sobbed.  Words cannot begin to describe how we felt.  I felt like my heart was ripped in two.  You can imagine.

In the end two things helped us decide.  Firstly, I thought at what price life?  What kind of life was I condemning my child to?  That was no kind of life at all.  The poor baby has suffered so much in his short life I could not bare for him to be subjected to any more, I wanted him to be free.  To be perfect in heaven, to be whole.

Then secondly, I could not stand that thought of him dying alone, that was unacceptable to me.  He came into this world from my body, he would leave it with me there.

The Dr asked us if we wanted to switch the machine off ourselves.  I looked at him as if he was crazy.  I could never do that, but apparently it helped some other parents to do it.  I said no.  The dr said he would remove all the pipes and tubes from Ben, dress him and wrap him in a blanket, switch off the life support and then come fetch me.

They handed him to me (oh god this is hard to write, weeping now) and he lay in my arms as his breathing got slower and slower.  Poor Marko wept, but I was strangely calm.  I kissed him all over, it was the first time I had held him.  I kissed his eyes, his nose, his mouth, his head, everywhere.  He lay in my arms for about 30 minutes, that’s how long it took him to die.  I held him close to my heart, his heart against mine.  As he drew his last breaths it felt like his spirit moved from his body into my heart, and there he will be forever and ever.  A picture if you can bare it.

I am so glad he didn’t die alone, I wanted to be there with him, the thought of him dying alone was more than I could bare.  I also didn’t want him to have a life of machines and hospitals.  To me that is no life.

I don’t know, not much point to this post, except to say that for me, in my opinion, life means more than just being alive.  If that ever happened to me, I would want to die peacefully, with dignity. Not be kept alive artificially just to have ‘life’.

Wow.  Sometimes I forget the enormity of what happened.  I suppose that’s a good thing, you can’t live in that intense pain forever.  But wow, when you go back to that place the pain just takes your breath away.

Comments

[Faerie]

Oh Tertia, your post tugged at my heart strings so. I cannot even being to imagine the pain you went through, and your description of your son's last minutes on earth is truly touching. You are a remarkable woman, and I deeply admire your strength.

[Kay]

Loving thoughts to a wonderful mother. Ben was as lucky to have you as a mom as you were to be able to witness his passing into perfection. My heart goes out to you. I hope Ben keeps an eye out for Adam and Kate. They have their own personal angel.

Peace to you. And sincere admiration.

[Wavery]

You've been through so much.
-in awe of you.

[Allie]

Teria,

Thank you so much for sharing such a personal painful memory. I cannot imagine the pain and heartache of Ben's passing. You allowed him the right to die with dignity and love, in your arms, and then in your heart. He will be in your heart forever and ever.

Thank you.

[Lucy]

Oh god Tertia, I really should not read your blog at work. I am such a mess. Poor little Ben, life is so unfair. The picture is beautiful. I has a miscarriage on Sunday after trying for 16 months (at 7 weeks), and it's almost more than I can bear, but your pain on losing Ben... well, it must be indescribable.

But every day I am so glad to wake up and see that you are still preganant.

[Brandy]

That is such a touching post. I wish no one had to go through all of that. As I told you before, Hunter was stillborn when I was 21 weeks. Even though he was never alive outside of the womb, I miss him dearly. I remember lying in the hospital bed and holding him and also holding my pregnant belly that still had Blane and Dylan in it. I thanked Hunter for giving his brothers the chance to live inside of me longer.
As you also know Blane and Dylan were 22w 6d and I was told they would not survive, we had the choose to resusciate the babies or not if they came before 23 weeks. We told them we had to think about it and my husband would have the answer when the boys were born. We talked about it and decided if they came before 23 weeks we were not going to resusciate. I went ahead and took the steriod shots just in case I could hold off longer or deliever one of them and hold off on the other. Well they came before 23 weeks, but when I went into labor, we called the neonatologist and told him we wanted him to make the decision when they were born. Of course he said he would not resusciate because they would not be old enough.
Well, Blane came first and he CRIED!!! Everyone in the room (16 people) stopped everything. I thought I heard it and slapped my husband and Blane did it again. The doctor could not believe it. So he resusciated him and off to the NICU.
We tried to stop labor but two hours later I had a very bad infection and I was completely dialited so Dylan was coming. He did not cry, but scored a 6 & 8 on the apgar test (very good for preemie).
The next day I started crying and telling my husband, mother, grandmother and nurses that we had made the wrong decision, we needed to let the boys go. They had the doctor come in a talk to me and he said that because the boys wanted to live (because of their actions) that by law he had to resusciate the boys. He said that is what he thought was best and there was no other way. He said maybe down the line we may have to let them go, but for now the boys wanted to live.
I know what you mean when you say you never know what the future will be like for preemies. I worried for 17 weeks while they were in the NICU, but I could feel that my boys wanted the chance to try. I guess that is some type of peace that got me through everything. They both had very hard times, but always pulled through like real men.
Dylan is small and has a hernia, but that is it. He is above his corrected age in developmental skills. Blane has a VP shunt, has severe hearing loss and a feeding tube. He is delayed in his developmental skills, but these are all things that can be treated and he can catch up with his brother. I am proud to have fighters as my sons.
But if they had not been fighters or were a lot sicker, I do not think I could let them hang on for no reason. I believe you made a very reasonable yet heart breaking decision. You did what was best for Ben. You are very brave.
I hope you do not have to deal with the NICU and everything that comes with it, but just remember things can turn out good even though it looks bad at first.
Sorry this was so long.

[Raquel]

I have been reading your blog for awhile and quietly adding my prayers for you and your little ones.

This is such an important topic.

I have a 24 weeker with severe multiple disablities. I could never imagine a life without him.

But, after my experience I belive that all women should be given information about the realities of premature birth. Especially, weeks 22-25/6. Especially women experiencing a high risk pregnancy.

We test women for so many rare conditions but don't educate them to the reality of premature birth. All women should know the cold, hard statistics of the lives of children born very premature. And then they can make informed decisions.

If you don't know much, it is hard not to believe that your baby will be the movie of the week. And, life dosen't always turn out that way.

I am not saying that early preemies shouldn't be saved. I am saying that women (and their partners) should be educated and allowed the choice.

Off my soapbox. Thanks for talking about an important topic.

[BTW, I came to your blog b/c I have been unable to get pregnant for over a year.]

[Abby]

As always, Tertia, you are eloquent and right on point.

Although I have a preemie, he was born past the dotted line of viability. He was born in rural Alaska. He shared the NICU with a baby whose mother I learned so much from. Her first child was born at 24 weeks, at home. There are no real NICU units in Alaska. Babies born before 33 weeks are life-flighted out of state. This woman made the decision, when her contractions became unstoppable, to birth at home. Although her decision was not as black-and-white as pulling a plug, the implication was the same. If she gave birth at a hospital, her child would no doubt be taken to a far-away hospital. If he died, it would not be in her arms. If he lived, it would be in a hospital thousands of miles from home. So, she chose a brief life over a possibly longer and painful one. Her son was born at home, in the quiet and dim of the bedroom he was conceived in. He took a few breaths, and then was still. In my eyes, she gave him a life of grace and dignity. So many others disagree.

There are so many success stories of preemies out there. I agree, it is hard not to hope that your child will beat the odds. I can't imagine having to make that decision. Still, there must be respect those who hold quality of life in the highest regard. We can't second guess a mother's decision, and we certainly can't try to influence that decision by insisting on resuscitation.

I have so much respect for you, Tertia. Thanks for bringing this to light.

[Boulder]

You are an amazing mum to your boys. That you let Ben go to see Luke and that you let Ben be with you just as Luke had been.

Kate and Adam are so very lucky to have you and Marko here with them, and Luke & Ben before them.

I cannot ever imagine walking in your footsteps, but you've shared so vividly the feelings that you've had, the way you wanted to be treated and you make me think. We've always said, my DH & I, that achieving a family was not "at any cost." And we've been terribly aware that because of state laws, hospital policies and all the wrong things that our wishes might not be reality if we were in the same spot.

I remember vividly in January going to the hospital on the 9th with my own problems, and thinking, please, please let all be ok for Tertia and her family. And weeping when I returned on the 12th because you'd had to say good bye.

You've shared the reality of what being a parent is really all about - hoping that you can make the difficult decisions in the worst of circumstances, and trying to make the best decisions in the others.

Thank you.

[Andrea]

Oh Tertia what a wonderful, sad, beautiful post. A friend of mine lost her full term son at 12 days, she too made the decision to turn off life support. Only now do I have some tiny understanding of what it must be like to lose a child.

[anon, again]

tertia - i follow many of your inner posse's blogs, although rarely post. your post moves me. when my son was teetering on the edge in the nicu after he was born, there were many moments when it seemed like our story might echo yours. we were blessed, and our ending was different. but, god, the connection i began with him in the nicu was more full and deep than ever imagined - we lived lifetimes in moments because we weren't sure how much time we had. i can't find words for it, but i weep for you and for me and for all of us who have been there, and for you more, because of ben and luke.

i am in california, but i am pulling for you. i'm hoping that, with kate and adam, your experience with motherhood will move to encompass not just the soul laid bare, but also a kind of joy i can't find words to describe - a joy of possibility, for the life that awaits your children, one that hopefully will continue long after you and i are gone.

i think it's only natural to feel your grief again now - part of being ben's mom, and luke's mom, and preparing to be mom to kate and adam. be courageous, my dear. you are loved.

[wishIknew]

Tertia,

You have been thru so much. The questions you ask are good ones. I find myself asking what can I do to prevent a premature birth? From what I have read - not much. This is my first pregnancy and at age 41 may be my last.
Part of me reads to know what can happen and part of me thinks I should just put my head in the sand and deal with a crisis if and when I have to.

Being home on bedrest, you have so much time to think. I had one idea today but was thinking you might consider it [what is the term you used? naff? (sp?)].
I don't know if you would be interested in listening to a CD with imagery etc. but I went for a walk with it today and thought of you.
http://www.healthjourneys.com/product_detail.asp?id=15

Hoping things continue to go well for you.
Babies in Jan. Babies in Jan.
'wishIknew'

[Jennifer]

I have been following this young woman's story ever since she gave birth to her son at 25 weeks:
http://tamyu.net/index.php?blog=6

After months in NICU, he finally came home today.

[Janine]

'Wow' is right. While reading that, I had to stop, because it took MY breath away. I don't know what the answer is - it must be the most horrific decision for a parent to make. Your decision to not let Ben die on his own just seems so right - you did the best thing for your little one.

[Kim]

Tertia: what an amazing post, from an amazing woman. I have thought about this a lot when I read stories such as yours and the news items you describe. I really don't know where I stand, as the most profound questions about life and death are involved, and I can't answer those for sure. But I do know that a boy here in England was born with a disease that caused him to lose the top layer of skin (the dermis? epidermis?) and he recently died as a teenager. He was a thoughtful and funny person (eg. he said that his condition presented difficulties with wanking off) and, when asked whether, in his view, a woman carrying a foetus with his condition should terminate the pregnancy, his response was "of course." Not, in his eyes at least, "life at any price".
Kim

[Toni]

Can't stop crying. Will try to comment more later.

[Katy]

Crying. You really are amazing.

[tess]

tertia, your tragic story is so beautifully told, your grief and love clinging to each word.

excellent post. takes me back to the day when we removed carys from the "life saving" medicine, because administering it was too painful for her. if my daughter only had days to live, i didn't want her to be in agony for that time. quality of life.

thank you for having the courage to visit those january days again, and for having the courage to love again. bless you, and your family.

xo tess

[mamacate]

It does take your breath away. Oh Tertia, what a beautiful post. I'm so sorry. I have another friend who recently had a similar experience with her DS after many months of NICU time. For both of you, I am grateful of the time you had to hold and kiss and cuddle and love your babies. But I am so sad that it wasn't a lifetime.

I love the image of Ben's heart flying into yours. I know he'll be there forever, and you will always hold his memory and hold his spirit with you in the world.

Thank you for sharing him with us.

Much love and healing. Cate

[Sarah]

Oh Tertia,

A beautiful post from a beautiful mother. No one should ever have to make the decisions you and Marko had to make, and so many others have to make. It is so heartbreaking for me to even think about.
What you did for Ben, in my opinion, is the most loving, beautiful choice you could have made.
And no one can know what they would do unless they are faced with the same heartbreak.
You are an amazing mother, Tertia. Ben knows this, and Adam and Kate know it too.
Love,
Sarah

[Jane]

Tertia,

Your story seems so much like mine. My son James lived 5 days and we faced the same decision as you, leave him on life support or allow him to go peacefully in our arms, we chose the latter. We were also told that he would die, it could be a few days or weeks or longer but if a miracle happened and he lived he would be hospitalized forever.

My other 3 children are home though, all 4 born at 26 wks and all under 2 lbs (Emma and James under a lb - Emma - 385 gms) They have some problems but none so bad that I would ever think the right decision would have been to discontinue the support they needed while hospitalized.

It is a deeply personal decision and one only the parents can make when faced with such a horrific situation. We chose as you did and would do so again even knowing the pain it caused us. I hold on to the hope that James has a much better life now than he would have had if he remained here on earth with me.

[Kristin]

Oh Tertia...what a touching post...and what a great amount of love you showed for Ben when you made that heartwrenching decision. Thank you for sharing his story again and for sharing the picture.

[Summer]

Tertia, I admire you for having the strength to make the decision to let Ben fly free, for having the strength to go on living after losing him, and for having the strength to think about it and write about it now. I'm just so sorry that you had to go through such shit to discover how strong you really are.

In my first pregnancy, I knew that something was wrong almost from the beginning. My rotten scores on the triple screen test just confirmed that something (we knew not what) was very wrong with the baby. Even as I prayed for my baby to be born healthy, I knew that I had to prepare for the worst. I found myself praying, "Lord, if this child will be too ill to have a full and happy life, take him now." I didn't want to have to make that awful decision, at what price life, though I had decided to go for additional testing so I could make a decision. When my child stopped moving at 17.5 weeks, when I woke up the next morning bleeding, I knew that one of my prayers had been answered. Mixed in with my heartbreak was a feeling of relief. I was spared a terrible decision, and my child was spared a life of pain.

Count me in to the hordes praying for happy January birthdays for Adam and Kate.

[Mandy]

You've been so generous in sharing your most personal thoughts and emotions. Each time you talk about Ben, my heart is so touched with the love you have for him and the strength you've shown. Thank you for sharing him with us.

As always, this discussion was presented by you with class and such grace. I am deeply touched.

[Woodys Girl]

I don't see how your post could ever be "contentious." Your choice was yours alone - who has the right to second-guess you?!

As to your actual post... I don't even have words to do it justice. Almost feels (to me) sacreligious making a comment, since I have never experienced the depth of your pain.

Bawling here... both from your post, and the similar stories mentioned in comments.

May God bless your babies... ALL of them.

Love,
Jennifer