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?
-No.

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.]

Writing It Down

M. and I are taking things moment to moment. Some are harder than others. We are so, so thankful for the short time we had with Isob*l and Jov*ta (pronounced yo-VEE-ta ) and we are just trying to keep the memory of their lives fresh before planning any formal memorial service. M. is at work today; I am not sure when I will be returning.

Here is a brief account of what actually happened (please, if you’d rather not know, just stop reading now. It may be a little too graphic for some. But it helps for me to write this down.)

Some of you may have known I have been experiencing some cramping during the pregnancy, but nothing out of the ordinary. Those cramps began to increase in strength and frequency Thursday evening and it soon became pretty clear we should head to the hospital to see what was going on. I wasn’t particularly concerned. I assumed they were Braxton-Hicks (fake) contractions, they’d give me some medicine for the pain, I’d head home.

We arrived and I was monitored, but the cramps (contractions) continued to increase and they began to give me some medication to hopefully slow them down. This is where things started to get incredibly painful. When the medicine didn’t seem to be working, the midwife finally came and examined me only to find that my cervix was significantly dilated (8 cm) and "odds of delivery were very high."

My obstetrician and maternal fetal specialists were called in and that’s when news went from bad to worse. An ultrasound showed that the cervix had probably opened due to a uterine infection and Isobel had already started to descend into the birth canal. Not wanting to be left out, Jovi stuck a foot in there too. We would absolutely have to deliver Isobel or risk serious consequences to both me and the babies. The choice now was about saving my life and seeing what, if anything, could be done for Jovita.

We decided to continue the magnesium shots to try to slow contractions and ease the uterus enough to get Jovi out of the birth canal and back into the uterus. If this happened, we could attempt to deliver Isobel, stop labor and tie the cervix together (cerclage) to buy Jovita more time. Even with the cerclage, there was no guarantee Jovita wouldn’t want to be born the next day or the following day. She could be there for a few hours or a few months. I would be on hospitalized bed rest until that time came (which was fine by me).

Hours and hours and hours passed with M. never once letting go of my hand. Contractions remained constant. An amniocentesis was done on Jovita to ensure that the infection hadn’t spread to her sac. It hadn’t. But her little foot was still dangling. I was literally lying on my head in the hopes that gravity would help us out. It didn’t. It was becoming clear that the situation was not going to change for the better. We could either wait for the membranes to burst on their own, or begin delivery and in the words of one doctor, “let nature take its course.”

During this time, legions of doctors and nurses were in and out of the room. One of the visits was from the head of the neonatal unit who came in to give us our odds. At 21 weeks and 6 days, there was really no question of trying to incubate or resuscitate the girls. If they were a few weeks older (23), that might have been an option, but one with less than a 10% chance of survival. That’s just survival, not taking into consideration very real possibilities of lifelong disabilities or issues. If they were a month older (25 weeks), odds would be better. Even if we could save Jovi, we would be taking things day by day, just hoping she hung on long enough to survive on her own.

After 18 hours of labor, it made little sense to continue waiting since the girls wanted to come out. I received an epidural and we went into the O.R.

Isobel was born at 3:37 p.m. Friday afternoon, weighing 14 ounces and measuring 10 inches long. She was placed right into our arms. When she came out, M. exclaimed, “Oh my goodness!” and I immediately thought something was horribly wrong. That wasn’t it at all. She was just so stunningly beautiful, it took his breath away.

The doctor was nearly successful in getting Jovita back into the uterus when her sac broke. She was born 3:57 p.m. at 12.6 ounces and 9.2 inches.

We carried the two girls back to our room with us and spoke to them, caressed them, loved them, as their hearts beat well over two hours. We had so much to say! There were no cords, no tubes or wires in between us and our daughters. It was only them and us.

And now it is just us.