Saturday, November 13, 2010

Perfect Little Big Boy

"First off, let me offer my most sincere condolences for your loss. I am so sorry," the fetal pathologist began. "And let me tell you that Otis was a perfect baby. Everything in his development happened the way it was supposed to, genetically, chromosomally, with his organs, his body, everything. He was perfect."

With that, my tears began to fall. Just as I had known from the moment I saw him - he was a perfect little boy. From the tip of his squishy little nose to his pudgy little fingers to his squishy thighs and soft soles of his feet - perfect.

The findings discussed yesterday at the meeting with the NICU team and the fetal pathologist were not new, necessarily, but they did help us to piece together some of Otis' story. Their belief is that he was doing great up until the last few days of my pregnancy. Then, somewhere in there, he either got stressed or pooped just because he was full term (there was meconium in his lungs, only minor amounts, but enough to show that at some point he had pooped, but because my water was clear mostly, they figured it had happened probably a few days before he was born.) So he may have been slightly stressed at some point, or maybe just ready to start pooping. Meconium in a preterm birth they said is a sign of distress, but in a full term, not necessarily. I hadn't known that.

So, perhaps he was already stressed.

Then he had a two vessel cord. Not necessarily cause for concern, but, a little easier to bend. ("Folding a ribbon instead of folding a rope," the pathologist explained.) So it's possible his cord could have bent at some point, also taxing his oxygen levels.

My blood pressure skyrocketed on day two of my labor - for unknown reasons. High blood pressure = less blood flow through placenta. So again, taxing his oxygen levels. It wasn't Pre-E, so I hadn't realized the risk level. But it was still there. Less blood, less oxygen, more work for baby to try to keep everything alive in his body.

Long labor = lots of work for baby also. Start to finish, I was in labor for 71 hours. And there were times that my contractions were relentless in there, back to back, stacking on top of each other lasting 5 minutes each. Not easy for baby to stay strong through those, they told me.

My placenta was small(ish) - 40th percentile. Not small for a normal sized baby, but small for an almost 11 pounder. So again, the cards were stacked against him - poor little guy had to work to get what he needed, and he had done an amazing job of it, throughout pregnancy. But labor is hard work, they explained, and a long labor with a small placenta means even more chances he's not getting the full oxygen that he needs.

And then, in delivery, his shoulder gets stuck on my pubic bone. And he's stuck there for 90 seconds. Again, not long enough to do big damage, on its own. But for a baby who's been in labor for 3 days at that point, with a possible cord compression somewhere in there, fighting to get his blood for a while when my blood pressure was screwy, for an extended period of time - well, it's kind of like asking someone who has just finished a marathon (their first) to jump under water and hold their breath for 90 seconds. It was just too much for his body to figure out how to do.

If each of these things was an isolated incident, it's likely that the baby could survive. But all of them combined, it was just too much.

So his brain shut down. Hypoxic ischemic encephalopathy. Fancy words, basically low/no oxygen, low/no blood, brain damage.

And the damage was extensive. Throughout all the thinking, feeling, processing, "personality" parts of his brain. As they suspected when they recommended we take him off life support. Really, the only part that wasn't damaged with such extensive necrosis was the brain stem. The cells in his brain (and lack of another type of cell they see when damage has occurred farther out, timewise) revealed that the damage had occurred within 6 days of his death. So we have it timed at least to that point. And everyone feels that it was just a sort of perfect storm, a 1-2-3-4 punch that he just couldn't fight his way out of.

The good news in this is that they think the genetic marker that they found in Otis' array is really of no importance. It doesn't show up as a marker for anything they know of, birth defect or disorder or anything. E and I both will still be tested to see if one of us has the same marker/deletion. If we do, then we know for sure it's a Red Herring and there is nothing to be concerned about. If we don't have the same deletion, then it will be something to look out for in a future pregnancy. But it's of unknown relevance. It sounds like it's more of interest from a research standpoint to the geneticists than anything, but that it's not really of concern to us in terms of future prognoses. We will meet with the genetics team when the result of our Array Testing comes back in 4 weeks.

As a whole, they feel quite hopeful about future pregnancies for us. My age is of concern, of course. For that reason, and not because I had a child who died, they recommend a full battery of genetic testing. (We've already decided that if we are blessed to get pregnant again we will do a CVS at 11 weeks and also get a chromosomal array done too then.) They recommend that I don't go into labor ever again. Otis was fine, until I went into labor. Labor killed him, essentially. So, c-section at 38 or 39 weeks, provided the baby's lungs are fully developed and ready to go. This is also fine with me. I am very sad that I won't get to "do" labor again, that I won't get to push a baby out, feel contractions, ride the waves of childbirth. At the same time, of course, I am willing and ready to do whatever it takes for us to have a healthy living child at the end of a pregnancy. As I've heard so many BLMs state: Take this child however you need to. Just give him (or her, I suppose, though i am stuck thinking fetuses are boys because I am still so much with Otis) to me alive, breathing, crying, kicking.

They are concerned about a future baby's size because I grew such a big one the first time out. Subsequent pregnancies are shown to produce bigger babies. They can't find a cause for why Otis was so big - he was all in proportion, just big. (Beyond the 90th percentile in length and weight.) They recommend that I follow a gestational diabetes diet even though I showed no signs of GD during my pregnancy. They would like me to monitor my weight gain a little more closely. But not in a way that causes me to stress out, they were very clear about that as well. There was a moment in there where we talked about maternal weight gain as a risk factor, and I got very nervous and scared that all of a sudden, here was the moment I had dreaded - this was where the big finger of blame would come out of the sky and point to me...And yet, it didn't. They were very clear about this. "This would be more of a concern if maternal obesity was a factor, Sarah. That is CLEARLY not the case with you." They said it as if they were stating the obvious. E had to stop them and ask them to repeat it, to make sure I heard them. They laughed at his request, as if it were a joke E was making. E grabbed my hand, and looked me in the eyes, and said it again, and made sure I heard it. "This is not the case with you, Sarah. Your weight had nothing to do with this. The way you ate during your pregnancy had nothing to do with this. You are healthy. Your body is healthy. Please hear that."

"Take your folic acid. Cry for the loss of Otis. Stay in therapy. Eat green vegetables and lean protein. Laugh and dance with your husband. Walk your dogs. Ask questions. Get angry. Do what you need to do. And then come back, stop by and see us in the NICU after you have your healthy beautiful baby next year." The fetal pathologist added, "Please send me a postcard from Maui. And then send me a postcard of your second child."

And I know, it may not be as easy as that. But they left us feeling hopeful. There's still the overwhelming sadness, of course. I want my baby boy back. I want to turn back the clock to that 40 week appointment before labor had begun and demand a c-section right then and there. I know, they couldn't do it. It wouldn't have been ethical at that time. And with what I knew then, I would have refused it. And if I had requested to be induced at that point, who is to say that the labor wouldn't have also been as stressful on his body then. And then I would blame myself for getting induced and stressing his body in that way. I cried hard this morning, apologized to my sweet Otis that he had to work so hard and for so long in my labor. It kills me to think of him struggling, fighting to live, fighting to be born. It kills me to think it was a prolonged fight. A 1-2-3-4-5 punch. Or more.

But nobody made any mistakes. Nobody did anything wrong. It just was too much. The perfect storm. And it took my perfect baby boy.


sarah said...

We are planting bulbs today. Hundreds of them, throughout our front and back yards. Honoring our baby boy and his departure from this world, just two short months ago. Remembering him and putting bulbs into the ground. It feels like a very hopeful, symbolic act for the day.

hayley said...

oh beutiful girl,

he was perfect and you knew it, you're his mum and you saw that in him. poor Otis, poor little (big) lamb caught up in that perfect storm. what kind hopeful words the fetal pathologist spoke, I am glad you got to hear them.

I love you.


hayley said...

crossing over sarah.

what are you planting? what a hopeful tribute, joining in with the seasons, making the world look brighter.

love again.


æ said...

crying here, in colorado, about those texts that i got 2 months ago announcing his perfection. i remember the clarity with which you shared that: he. is. perfect.

he was a perfect baby in a perfect storm and i'm just so heartbroken that those things could line up like that, that they did.

sarah--it was not your fault. it was not anything you did before or during pregnancy or labor. it wasn't. it was not your body's fault. it was not your body's fault. it was nothing you did.

it was not your fault.

i so want you to know this the way the rest of us do. you'd have done anything for your boy. and you did.

i'm sorry none of us really can turn back time, convince us all to do things differently how we never would have dreamt, somehow change everything so otis lives. I so desperately wish.

I think of you and E and Otis, I feel O's presence, I send you all love, every single day. I spend so much time with the three of you. And I can't wait to see those bulbs.

all my love

p.s. you are the most amazing of the amazingest, great job showing up yesterday. and what a testament to your presence that you can recount and understand such a complicated situation--you are still very much awake and present and mama bear for your boy. you rock.

zubeldia said...

hi Sarah, love. Oh, Otis, so perfect, so perfect, perfect.

I have this real visceral image of you and E, and E speaking those words to you, sarahlu. It's really so touching and so true.

I am goad you feel some hope, some sense of the future and its beauty - in those bulbs, in Otis, in his future siblings.

Walking along with you on this path, dear friend, and we'll be planting some bulbs for your sweet boy, too. x

Angela said...

I am glad you feel some hope now. After the specialist told me it was not my thyroid disease that caused Charlotte's death I felt a huge weight lift from my shoulders. We mothers worry it is our fault, when really it's just nature, and a combination of things that went wrong. Thinking of you and Otis.

kate said...

oh sarah - i am so glad that there were no nasty surprises... that no blame was laid... that everyone was so very clear that this was not your fault, that you nutured and grew otis beautifully.

poor sweet otis. he was perfect - we all saw that he was perfect. i am so sorry that he isn't here but i am glad that you feel some hope and that you are planting a glorious garden in his honor.

kate xx

Merry said...

There are so many things that are similar - oh how I weep for you and us and all of us.

B said...

oh sarah. it's so unfair. so many little things. in some ways it's harder than if there had been one incontrovertible things.

i'm glad they were so kind and caring to you. xx

Maddie said...

Sarah - I'm so sorry there were so many things against your perfect little boy. I'm so glad you have E to remind you this wasn't and never will be your fault.

I've had two c-sections and sometimes feel a fleeting sadness that I'll never experience labour but the overriding thing is that two c-sections has gotten my two babies here alive (Matilda was four days old when she died).

You might be surprised about how you feel when you're pregnant next. After our experience at 20 weeks with Matilda (we were told there was a 75% chance of chromosome problems and had an amino - it came back clear because BWS isn't tested for routinely) I swore that in any future pregnancies I was having a CVS at 11 weeks. But then I got pregnant again and didn't want to take the risk. Of course, our situation is slightly different - I'm 29 and testing confirmed the BWS mutation was sparodic not familial. What I'm trying to say (in a very long winded way) is that you don't have to make any decisions about future pregnancies right now.

Sending love.

brianna said...

My heart breaks reading this. The perfect is just so wrong. I'm glad that you got some answers and that you were also given some hope.

Missy said...

I am so glad for you. I know that sounds weird. Even though everyone and their brother was telling us the doctor did something wrong, I still wanted it to not be true. I so wished it wasn't true. I would like to know how I am supposed to be able to trust anyone again. I wish I knew where hoped lived so I could go pay it a visit! Much love to you momma!

Anonymous said...

Oh precious Sarah- you are amazing. You did everything right and you did NOTHING wrong. I am so glad E repeated that sentence to you.
It was indeed the perfect storm with life shattering consequences. I am so very sorry my friend. I am thinking of you every day and hope more than anything that you will find peace in your days as you remember your perfect and beautiful boy. Sweet Otis....

Love and grace always- L

Jenn said...

I just can't even find the words. I'm so very glad you were given hope but I'm also so very sorry for that perfect storm that took your boy. Your perfect little big boy. Sending love. xx

Anonymous said...

Hi Sarah

I've just started reading your blog today. Reading this post took me back to the autopsy meeting for our son. In our case, we had a previously unknown set of genes that stuffed things up. But apart from that, everything on the report said normal, normal, normal. The whole thing sucks completely, but when I'm feeling strong I can focus on how perfect our little boy was, that I did everything right and this screwy thing happened to us anyway.

I've seen photos of Otis and oh my, he is so beautiful. Such a big, strong, beautiful boy. I am so sorry he didn't make it.

I agree that in future BLM get a free pass to say, today I know this baby is alive. Take them out however you can and give me a screaming, healthy child I can take home.

Thinking of you

Hope's Mama said...

Your story is so similar to my own. Long labour. Big first baby. And a few other things as well.
I am just so very sorry. Over and over again.