Chronicles of a Pregnant Woman - Introduction

Hello Everyone and welcome to my brand new blog.

I have decided to enter the blogosphere since I will suddenly have more time on my hands. Given the recent turn of events of the pregnancy, I will shortly be going on medical leave.

As an introductory entry, I wanted to start by including an email that I wrote to my family to update them on the recent events in our pregnancy. It is dated October 8, 2008. Here it is:

Hi guys,

Thanks for your emails. I just wanted to give you the latest via email since we didn't get back from the clinic until 9:30 pm last night. We were there from 5pm onwards. Most of that time was either spent with the fetal cardiologists (there were two) or the OB/GYNs (there were also two, in this case, Valdecasas and his daughter, who is also an obstetrician and very good at handling the instruments like the fetal doppler machine and the new high tech ultrasound machine.)

In brief, here is the situation:

The baby does indeed have a heart condition. At this point, it is not producing fetal distress of any kind. The fetal heart rate is normal, the perfusion of all the major organs and the brain is normal and the heart is not showing signs of any undue stress. The plan is to increase the monitoring of the baby to once a week and to act if anything changes, but not if anything doesn't.

Here is a more detailed overview of the situation for those interested:

The basic problem is that the baby does not have a ductus venosus. The ductus venosus is the duct that carries blood from the umbilical cord, through the liver and into the heart of the baby. It perfuses the liver as it passes through it, thereby reducing the quantity of blood that arrives to the baby's heart to a quantity the baby can handle. This baby does not have that duct. To give you a sense of what this looks like, imagine that you are looking at an ultrasound image of the baby's abdomen. You can see the umbilical cord going into the baby through the belly button (or what will become the belly button). On the interior side of the abdominal wall, the umbilical cord just keeps on going, straight to the heart. This looks like a garden hose whose width does not lessen as it approaches the heart. If there were a ductus venosus, the image would show a less direct flow of blood, one that went through the liver, and the tube would be smaller.

The consequence of the umbilical vein going straight to the heart is that a larger amount of blood than normal is arriving at the heart. This makes the baby's heart have to work harder to deal with the increased flow and resulting pressure that is generated. This baby is brilliant because it has developed three compensating mechanisms on its own to deal with this situation. The first is that the heart itself is enlarged. It occupies about 50% of the thoracic cavity. The second compensating mechanism is hypertrophia of the heart wall, especially the septum. In normal English, this means that the heart has thicker walls than a normal baby's heart, in order to contain the increased pressure of the blood flow. The third compensating mechanism is the spontaneous development of a small duct that connects both the ventricles of the heart. In a normal baby, this connector would not exist. In our superbaby, he has developed it in order to redistribute the blood flow more equally, thereby decreasing the pressure. Or at least that is how the fetal cardiologists are interpreting it at this stage.

Currently, these compensating mechanisms are working. In other words, there are no signs of fetal distress that can be seen at this time. Signs of fetal distress would include cardiac insufficiency. This means that the heart would not be able to adequately pump out the increased volume of blood and we would start to see pooling of blood in certain regions of the heart or swelling of some of the chambers of the heart, called edemas. Neither of those is happening at the moment. We might also see an increase in blood flow to the kidneys and the brain. An increase in blood flow to these areas might be a sign of distress because it would indicate that the baby was basically doing triage - prioritizing the most important systems by shunting more blood to them because it was in distress. Both the renal and the cerebral blood flows have been checked and are completely normal. Finally, the heart rate of the umbilical cord and the heart itself are both completely normal.

Plan of action

The plan at the moment is to increase the monitoring of the baby to once a week. This should be enough time to catch any signs of cardiac insufficiency in time to act. This is a problem that evolves, with early warning signs, so increased monitoring should help (as opposed to the umbilical cord problem that Sydney had, which changes from one moment to the next and therefore cannot be solved with increased monitoring because there are few to no early warning signs). Increased monitoring also includes the fetal cardiologist, who I am scheduled to see again in three weeks' time.

What could change

Everything the doctors are doing at the moment revolves around controlling the situation so that the baby can stay and develop inside me for as long as possible. This is to avoid a situation where we would have to deliver a severely premature baby with all the attendant consequences that would bring. I am in week 30 at the moment, so every week that we can maintain the status quo of this situation is a success because it gives the baby a chance to mature and develop. Getting to week 34 would be a big milestone, and getting to week 37 would be fantastic.

The one thing that would cause the doctors to act and take the baby out no matter what would be signs of cardiac insufficiency, because that is something that can only be managed outside. So, we are doing everything to monitor that and hope that we don't see signs of it. In terms of how this affects what I do and don't do, it means that I just need to lay pretty low. I have cancelled my two remaining trips which includes Cannes, so no keynote for me. After a little thought, I have decided to follow my doctor's and some friends' advice and go on medical leave. This way I can keep myself busy without having obligations that could add to stress levels. [This blog is my first assertion of the new me and how I want to use this time.]

It goes without saying that this situation is extremely rare. The fetal cardiologist has only seen one case like this before (and he is about 60 or so) and Dr. Valdecasas (my OB/GYN) has never seen a case like this. Once they opened with the fact that this was extremely rare, my belief in their credibility went up because obviously rare is the way we like to do things around here.

It is worth mentioning that in the one case the cardiologist did see, the baby was absolutely fine. There was no need for an operation to fix the heart because all of the systems that are currenly being used to bring blood to the heart become obsolete as soon as the baby is born. This is because the baby begins to use his lungs once out. The ductus venosus is essentially a bypass mechanism to bypass the lungs, which are full of amniotic fluid while inside the mother. This ductus (and of course, the umbilical cord itself) becomes obsolete once the baby starts to breath air. The duct normally spontaneously closes, as should the direct umbilical vein conduit. This is what happened with the other case. The connector between the ventricles should also disappear. The cardiologists will monitor this once the baby is born to ensure this is the case. Now we are just concentrating on getting to the point where we have the privilege of having that problem. The prognosis, based on the other case, looks promising. The cardiologist said the other baby was absolutely normal within 20-30 days of birth, by virtue of using its own self-correction mechanisms. Amazing, no?

In general, the care we have gotten has been stupendous. In the last 48 hours, we have seen the specialist and Valdecasas twice and not once have we had an actual appointment. They are just making things happen for us. They are taking great care of us and it is reassuring to know that we are in good hands. D is being wonderful, as usual, and so are his parents and our friends.

Keep sending those golden Mesaglio rays and thinking good thoughts. We are.

I miss you all loads and loads.

Mary