Thursday, December 18, 2008

Answers. More Questions. Disciplinary Action.

[or, The Not So Nice Parts of the Birth Story]

A few days after the birth of the girls, it was obvious that there were some unanswered questions that were eating away at me. M. kindly suggested that I, "write them all down. Put them in a notebook to take to the doctors, and don't think about them until we are there."

And that's what I did.

And this morning I pulled them out. The first stop in our back-to-back doctor tour was with the perinatologist who delivered us. He got the brunt of the technical stuff.

First, the easy ones:

Are you mad that I've been walking?

Can I start to exercise again? Do I have to wait 4 more weeks?
-No. No problem. Resume your regular routine.

Does that mean everything? Do I have any restrictions now?
-[Do you feel ok? yes.] Then Nope. None.

Now, the harder stuff:

Do you still think an infection caused the pre-term labor?
-Hard to say. We know that by the time we saw you [around 3 am Friday morning], the first baby's sac was fully exposed. Her placenta and umbilical cord were infected. We won't be able to pinpoint at what point they became infected.

If there was an external infection, why were there no symptoms? No discharge. No bleeding. No pain while peeing, nothing!
-It is actually quite common for pregnant women to have bladder infections, for example, with no symptoms. What is even more puzzling is that your 19-week scan looked terrific. No issues there. Something must have occurred within the course of those 2 weeks.

Could my weakened immune system and lack of a spleen had anything to do with the cause, spread, increase of infection? Should I have ever stopped taking penicillin on a daily basis (had done so for years after Hodgkins)
Probably not. Unless you know you have an infection, there's no sense to pump your body full of antibiotics. And you had probably developed a resistance to your dose of penicillin years before you stopped taking it. I see that as a non-issue.

What came first - the infection or the cervix opening? Was the infection made worse by the cervix opening and exposing the sac or did an internal infection cause the cervix to open?
-We honestly do not know. But we do know that we can take preventive measures for both the next time. Trust me. We will be watching you like a hawk.

Is it possible the infection was already there at 19 weeks when I had my scan?
-Yes. It's possible.

Do you see any reason why I would not be able to carry a pregnancy full term? Any hesitation recommending that we try again?
-I see no reason why you couldn't have a healthy and full-term pregnancy next time. We learned a lot. We know what to watch for. Try again when you are ready. We will not lose two in a row.

And here's where it gets dicey:

What are the differences between cramps that are "normal" and ones that should be watched?
-When in doubt, call. Come in. We'll check you out. We'll always err on the side of caution. Especially with twins.

But, we did.

We did call. My doctor's office at 7:30 p.m. that night when cramps became strong and regular. How long apart? About 20 minutes. Any bleeding or discharge? No. The midwife on call told me to relax. Go home. Take a bath. Put my feet up. Call in the morning.

I did that. And the cramps continued. And became more frequent and by the time we could set our watch to them - every 10 minutes - we called again. She told us to head to the hospital. She'd meet us there. That was around 11 p.m.

We were there in minutes. She was not. In fact, we spent the next several hours in a corner stall getting "monitored" as cramps and pain increased, I was urged to give a urine sample (where I am convinced that I could feel the sacs starting to descend) and M. was left pleading to anybody who would listen, "please. I don't want these babies to be born here!"

Medicine to stall the contractions finally arrived and made no difference. The midwife finally arrived, after I had begun to bleed and show a discharge, took one look at my cervix and said, "you are fully dilated. I can see a sac. Your chances of delivery are very high."

And that is when my doctor was called. He was there in less than 15 minutes and had already called the perinatologist en route. They were in our room before we we were.

So, do you think that timing could have made the difference?
-It is possible.

If we had arrived earlier? If we had been seen earlier? Could any of this changed the outcome?
We cannot say for sure. It could have been dicey either way. But yes, perhaps, with more time, we could have at least had a better chance of saving the second baby. how much time, that's hard to say. This is where you start to play the guessing game. I can't tell you when the tipping point would have been.


If time could have made a difference, how much time did we lose when the midwife told me to "go home and take a bath and relax" at 7:30 pm? How much more time did we lose when we lingered in a corner stall in labor and delivery being "monitored" and nothing else until hours after we arrived?


When we got to my obstetrician's office (just down the hall), we learned that he, too, had those same questions. While he didn't say anything at the time, he told us now that when he arrived at the hospital he was very bothered by the fact there had been communication with the office earlier in the day, that there had been such a lapse between our initial voiced concerns and when he was actually called. And that we weren't told to come in and be examined immediately.

We talked with him for a long time. He said there were two questions: "what could have been done to prevent the premature birth?" and "was the best possible care provided and all steps taken at every level?" While we don't have definite answers for the first, he said that in his mind, the answer to the second was no. And that he was going to do everything possible to remedy that. He refused to put his family name on a practice that delivered sub-standard care. You trust people to be on call and be a representative to your practice. In his mind, this was a deal-breaker.

We spent the next several minutes with the HR Director of the office trying to get down an exact time line of what happened and where, in our opinions, there were gaps in care. I don't know what will happen to this account, or what will happen to the midwife who shouldn't be. I am trying not to.

I know that this morning opened up a lot of wounds for M. That he had already come to the conclusions that he could best live with, and that some of the answers we received put those in question. I also know that I needed to hear answers. I needed plain, unsugared explanations. And I needed to know if there were points along the way where I was at fault.

I don't know if a few more hours (few more days?) would have saved my girls. I don't know if Isobel was destined not to be here from the beginning. I don't know if Jovita would have had a chance if we had bought her more time. I don't know. I won't know.

[Updated: I actually just received a call from the perinatologist to clarify: a few hours probably would not have made a difference, especially since my white blood cell count was so sky high by the time they saw me. A day, maybe. But even then there is no way to know.]


Waiting Amy said...

I'm so sorry m, it is so difficult to second guess everything. I hope you will find some peace as things move forward.

IdleMindOfBeth said...

I'm so sorry. It must be so frustrating to have answers lead to more questions and finger-pointing. The "what-if"s must be torture.

Keeping you in my thoughts and prayers.

Anonymous said...

I've been thinking of you all day and hoping that things went well with the Dr.s. I am grateful that you will be able to have a next time. =) I'm sad - and pretty pissed to be honest - that it took loosing I and J to get people to step up. I am impressed that your Dr. took some responsibility for what didn't happen. In this day and age of everyone suing for everything, that's highly unusual.

Like you, I needed to hear the answers. M was so wise to have you write everything down. From the moment I received your text and called my Mom sobbing, I told her I didn't understand because you had done EVERYTHING right. Your eating, your excercising, even your spirit were so focused and doing whatever was best for the girls. Because YOU are an AWESOME MOM!

Loving you and M!


P.S. Did you hear we might have a big snow storm on Sunday??? *giggle*

Ryan's Mommy said...

I hate that this happened to you. I hate that people may not have done their jobs right and it possibly resulted in such a tragedy. I hate that you may never have answers.

All I can say is that your OB sounds like he'll kick ass and take names, and that's good.

Amy said...

I am so angry on your behalf, but I'm glad you got some answers, even though they were hard and awful ones. But everything about losing the girls is hard and awful. I think of you often.

Summer said...

I don't know if you and your girls had the best possible care and whether that was a factor or not in losing your girls. But from what you've written I have no doubt that you and M did the right things at the right times.

Mo said...

Wow. Lots of super hard questions. I'm glad they deigned to give you honest answers as best they know them. You deserve nothing less. I hope the more information you have, the more peace you can find.

separate topic, but didn't know before this post that you'd had hodgkin's too. i knew we had cancer in common but didn't realize we had the same specific kind. glad we both made it.

and also am really glad the drs were able to say they feel confident that you'll be able to make it to term next time. small consolation, I know.

thinking of you and your husband.


Melbagirl said...

You are very brave to have handled this so well in your delicate condition. My prayers are with you.

Sue said...

I know the answers to your questions were very hard to hear, but I'm glad the doctors were so honest with you and willing to question what went wrong. I hope that is of some comfort to you. You and M. did not do anything wrong.

Lisa DG said...

What a nightmare. I so feel for you. It is hard to not look at all the possibilities. I do it too. I am so sorry for your loss.

Erin said...

I am so sorry you lost your girls. I hope that talking to the doctors gives you some answers and peace.


Kami said...

It must be hard to wonder if you or your caregivers could have done something differently. Not that I think it helps to second guess the best decisions made at the time, but I do it and I think it is human nature.

I don't know if this helps, but my midwife ignored a lot of my early symptoms too. Later when I told a friend what I said she said it wouldn't have raised any concern with her either - pregnant women worry and pregnant women have contractions.

Again, I'm sorry.

Lacri said...

"But we do know that we can take preventive measures for both the next time. Trust me. We will be watching you like a hawk."

This statement makes me so angry. Why wait for someone to lose a child before offering the highest standard of care? Our firstborn are not dispensable!