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

[patricia]

Tertia, you are so very brave. Tears are streaming down my cheeks. This will always be a very deep wound. God, so deep. Adam and Kate cannot take that away, but I am hoping that they will help you continue to heal in this lifelong healing process.

Take care.

patricia

[Aurora]

Tertia, your moments with Ben are the most precious thing in the world. This topic is such a difficult one because you can't possibly know what you would do in that situation unless you were there at that moment with the decision to make. It takes an incredibly stong family to make the kind of decision you made and I admire you and Marko a great deal for it. You have been so strong in letting your boys go and now you have Adam and Kate to focus on. It can't help but be painful for you to relive what happened, especially while having to stay in bed. I pray for you and weep with you.

[AyEnDeeAreEeAyAitch]

T~
Now that I am a mom, I can fully understand what it was you went through as a mom too. Your strength, bravery and raw, true love for your son Ben is just amazing. I stared at your picture holding him for like ever and I can see the depth of your love for him in the subtle features of your grip and the how you are totally studying his face. You did a good thing, you did what was best for your son even if it didn't feel exactly right for you. I understand your sacrfice for him.

You are just so fucking awesome.

[Amy V]

That was so beautiful, thank you for sharing it with us.

When we lost Isabella, I thought then, and still do, how incredibly grateful I was to have been with her when she died. That I knew she wasn't alone. I didn't have to make the choices you did. I did however, have to face the death of my child.

I spent the whole pg with the twins, holding onto the thought that if one or both of them died, at least they wouldn't be alone, I would be with them. Odd thought, but it helped me.

When I went into labor at 24 weeks, we then started talking about what to do if labor couldn't be stopped. As a nurse, I saw so much of the good and bad of medicine. I didn't want them to suffer simply because I wanted a baby. I also didn't want to give up on them. Even after they were born at 28 weeks, I often talked with out care team and family, wondering when is enough. When I looked at the facts, the answer became clear. I was so very fortunate in that.

Again, thank you for sharing that. From personal experience, I can tell you these are the memories that are going to haunt you for a long time in the future. Sharing them helps no only the rest of us to share in your life and journey, but you to heal a little....even in minute ways.

[anotherjen]

I cry every time I read about Ben.
In my pediatric nursing work, I look after a lot of the kids who were saved at any cost.
I think it's different when a little one is just born. It's instinctive to want to do anything to save them. I cannot imagine the heart breaking decision to let them go when they're so small. But I see it all the time when they're older. It's so cruel that the realities of their lives and suffering sometimes only come clear when all opportunities to just 'let them go' are gone.
We're looking after a 16 year-old 23 weeker right now. He isn't terminal. He could live for another 50 years. I won't go into the horrors of his day to day life (but trust me- I don't use that lightly) the legal/ethical fights that are going on around this boy right now are staggering. The strangers who are well educated, but have never laid eyes on this boy are making the decisions regarding his life/care- even though his mother is still his legal guardian. It breaks my heart.
I suppose what I think is the just because we ~can~, doesn't mean we ~should~. It’s so important to have compassionate care at the beginning of life, and healthcare workers who will inform. I don't think there's really any easy way to tell someone the risks or potential consequences of continuing treatment on some of the littlest babies- but if the mom of my patient had been told what kind of life her son would face, he would be free now.
You are an inspiration

[Danielle]

Oh Tertia,

Thank you for sharing your beautiful and heartbreaking story. How brave and wonderful your decision to give Ben such peace in his passing.
I found your blog through Julie's, and although I am 36wks into a relatively uneventful 1st pregnancy, the stories of the posse and others have opened my eyes and my heart and made me so grateful. I have never commented before, but after reading your post, I couldn't not tell you how much I admire you and how much I am thinking of you. Thank you so very much for sharing. Blessings to you and your family.

Danielle

[Emily]

Tertia,

With tears streaming down my face I am reading this post. I cannot imagine. I am so sorry for all of your pain -- no one should ever have to make a decision like that. What a loving tribute to your beautiful boy from such a beautiful mother.

[Pazel]

I went into early labor with my first pregnancy at 26 weeks. I was bleeding heavily, had regular contractions, and had dilated to 1 before the drugs stopped it all. A few more trips to triage for the same thing and some bedrest and my daughter was eventually born at 40 weeks and 3 days. At 26 weeks, I didn't know what to think, except that I would have done anything to save her. I didn't know the implications of what that decision would have meant and I'm glad I didn't have to make it.

My friend had a bad ultrasound at 28 weeks. Her daughter was under sized and there were blood clots in the cord essentially starving the baby. She had to make the decision whether to do an emergency c-section or basically do nothing and stay pregnant. If she did the c-section, it would have been the cut that could have meant possibly no future children. Because the baby was severly under-sized, she wasn't like other 28 weekers. She would most likely die but perhaps survive only a few days. Instead she chose to be hospitalized and remain pregnant, knowing the eventual outcome. Her daughter died inside her a few days later, and she gave birth to her about 12 hours afterwards. I got to hold her a few hours after birth and I can say that she was perfect in every way, just very small.

I understand what the doctors are doing. They are trying to save the pain of the babies, and perhaps of the parents. When you have a baby, the first instinct is to do anything possible to save him. It is actually a higher level that must be reached to consider whether this decision is doing them more harm. It's hard to give up hope. I guess that's much more easily written than done.

I am scared of someone legislating when viability is or when parents should have to give up. It should be a personal decision by the parents. Yes, the parents are in extreme grief and shock and completely unprepared. It is the role of the doctors and hospital to educate and help the parents in making these decisions. It is not their role to make these decisions for them.

My heart is sick from what you had to go through. On the other hand, my heart soars with where you are now. Babies in January.

My friend has had 2 babies since her first with the help of twice daily injections of Lovenox to counteract the blood clotting disorder that no one knew she had until that point. It's almost as if the first pregnancy is a trial and then they know more for the second as to how to treat you. I hope it's the same for you, that this second time brings more information and therefore greater chances.

Babies in January.

[Carrie Jo]

Oh wow this made me cry, not good for a woman who is at work and PMSing. My heart breaks with the knowledge that I may have to go through something similar with my husband someday. I have no idea what I'd do if I were faced with that aweful task with my child too. And knowing it's going to happen doesn't make it any easier. You can never be prepared for it.

[Mollie]

Oh, Tertia.

You are SO terrific. I cried reading this, and think you are one of the most aware, compassionate people on the planet.

Thank you for this post.

[lindsay]

what an amazing post. Although I am pregnant (18 weeks and counting) - I was a 29 week premie weighing in at 2lbs in 1973. It never ceases to amaze me the courage of parents of premie babies. My parents lived at the hosiptal where I was born for the first 3 months of my life. And although I have had no disablities or set backs as a result of being premature, I am aware of the agonies that they suffered waiting and watching me grow and mature. I think about this now, as I wait for my child to arrive -hopefully on time and in the usual fashion. Some day your children will read your words of courage and appreciate your struggles to bring them into the world.

[Shelley]

I can't imagine your pain, but I do want to thank you for sharing your journey with us. It gives me great joy to visit your blog every day and celebrate the growth of Adam and Kate. Every single day they get stronger and bigger. Every single day.

[trinie]

Tertia,

thank you for sharing your raw emotion. I can't imagine the pain of making that decision but I think that in my heart I would do the same as you - let a baby go than see them suffer. I have never had to make that decision but I have held my baby in my arms after she died. That experience was the most painful but also the most peaceful that I have ever had.

God bless you and your babies. You are often in my thoughts and prayers that Kate and Adam will stay in you until January and that they will be born alive and healthy.

[Melanie]

I have no higher praise except to say that you gave Ben exactly the kind of death I would want my child to have-- in my arms, telling him I love him with every fiber of my being.

As for what price life . . .it's a tough one. One of my son's best friends was born at 26 weeks, 11 years ago, and had a brain bleed on day one . . . he needs a walker, help going to the bathroom & getting dressed and his speech requires some concentration to understand . . . and he's a really delightful funny kid. And I watch his mom and her constant work and there are not many people who are willing to wipe a 10-yr-old's arse, so she doesn't get to pawn him off much, and I think she's a saint. And I don't think she would trade a minute of it, truthfully. I wonder if that's the nature of these things-- it may be awful & hard but I wonder if the parents know, or fully care . . . I wonder how many would go back in time and abort or whatever, if given the opportunity to do after so having known the kid for a year or more . . . So I can imagine people being very glad they did not take heroic measures to save what was going to be a very sick child, but I can also imagine that the people who decide to take those measures are grateful that they did. I have no idea what I would do, and I hope I never find out. I'm sorry anyone has to find out.

[Chris]

Once again you have put into words what I haven't been able to. As hard as the decision was...I also cherished the short time I had with my little boy, Austin. I held him and I think he "knew" he was loved by us before he went to heaven. Sometimes it is the only thing that makes the grief bearable. Thank you for putting into words something so painful and personal.

[Sherry]

I'm in constant amazement of your strength, perserverence and compassion.

Thanks so much for sharing your story...

[Lauren]

You lead by example.
I can't believe some of the stories I've read here in the comments section. There really is nowhere else for these voices to be heard but you're sharing your story and your space and we're all learning. Thank you.

[kitten]

Tertia......I made the same decision in my case. I was only able to write about it recently. (post titled "No Title")

It is a decision no parent should ever have to face. But I would do the same thing all over again in those circumstances.

xo

Kitten

[Jen-earthchild]

There are no words for me to say. My heart breaks every single time I think of you and your precious baby Ben. I know now that he is watching over you, Marko, Kate, and Adam.

[marisa]

what you've gone through is something I wish to never experience. I pray that I die of old age before my son ever does becuase i could not live without him.

[ManhattanAnne]

Not sure if this is going to come out right, but I have long thought the photo of you and Ben is the most beautiful one on the site. It hit me the day you posted your gorgeous wedding portrait w. Marko, that sometimes our best moments come at the worst times in our lives. While you look truly happy & in love on the weding day, the picture with Ben shows incomparably deep wells of strength and tenderness, love and grace. Seeing that makes me hope to be somehow bettered by my own losses...

[susan]

Oh Tertia - God! I just can't take it anymore. I want to read the comments here but it's all I can do to make myself stop because I simply cannot handle any more heartache. Such strong people to have gone through this and survived, intact, to try again. I had seen your original post with that photo and had to stop reading your blog for a few days after that. I can never begin to imagine the strength that you have that got you through those 30 minutes - and every waking moment since then. Please - if there is a God - please God, let Tertia and her babies be perfect. No more of this heartache. It's just too much to bear.

[sara]

Oh sweetie. Ben was so lucky to have you. After the point at which Ben was at... He was so lucky to say goodbye in your arms. He fought, you fought, and both of you are amazing. The point at which Ben was at, there was no life ahead for him, nothing left to fight for. It was the right time, and he went in the right way. I hope to God that you never doubt that. The picture of you two saying goodbye is beautiful. He was a beautiful little boy.

Wow. Crying.

You're an amazing lady, Tertia. You, your babies, and Marko are in my thoughts.

[Michele]

Thank you so much for sharing your story of Ben. While I did not have the choice of whether or not to take my son off from life support I was there, and wanted to be there, when he did die. I really only remember the screams that came from my body ... the screams that I could not control. At that point I wanted to do any and every thing to keep him alive ... I now realise how selfish this was of me.

You make me laugh, cry, and understand that which I never thought I'd ever be able to.

[Janis]

Tertia, once again, I am in awe.

I have no doubt that Ben is at peace now. I'd like to think that he and Rissy are watching over us, over my twins and yours. Adam and Kate, Caleb and Livia.

You might find this totally insane, but I know my babies know who Marrissa is even though they were born 8 months after her death. From birth they would stare at her photo on the wall. They would stare at a corner in the room, smile, laugh and gurgle as if talking to someone who nobody else could see.

I believe that Kate and Adam will also know Ben. Not just from what you tell them, but from some spiritual connection they share.

I also believe that we will be with our children again someday. All of them. Those we held in our arms, and those who slipped away without ever being held.

Gaaa.. Too sappy this morning. Rainy dark days have a way of bringing out the worst in me.

Very thought provoking post. Much love to you, Marko, and the babes!