Saturday, February 9, 2013

Beginning a path of uncertainty...

We went in for our 20 week ultrasound on Monday afternoon with the full expectation that everything was going to be normal. Everything about the pregnancy had so far seemed on track. Monday night we got a call that the baby appeared to have a marginal cord insertion a the placenta (often not a big deal if that's all they see), was small enough that they feared intrauterine growth restriction (IUGR, big problem), had short femurs (potential Down's syndrome marker), and, biggest problem, appeared to have a congenital diaphragmatic hernia (CDH).

CDH is a condition where the diaphragm doesn't close during the early portion of gestation (9 or 10 weeks) and contents of the abdomen (like the liver, stomach, and intestines) find their way up into the chest. In a left sided hernia, the heart gets pushed way over to the right and the growth of the left lung is impaired due to the abdominal organs filling its space.

First thing Tuesday morning, we called the recommended perinatologist and they fit us in that afternoon. A more high-resolution ultrasound confirmed the CDH but they couldn't find anything else structurally wrong with the baby. We found out that we're having another girl. She was still measuring in the 5th percentile for growth but I mentioned that my uncle, an obstetrician, had done an 8 week ultrasound for fun when I was visiting them and that the baby was measuring much younger at that point. The perinatologist beamed and remarked that a first trimester ultrasound that was more than a week off from expected due date was enough to change to due date. After the appointment, we rushed home to get the pictures and, sure enough, they ended up changing the due date to 6/29 from 6/20 - meaning we now have a baby growing just above the 75th percentile - almost chubby really. :) Taking IUGR out of the mixture for the time being is really important for her chances at survival.

They also did an amniocentesis to rule out genetic defects. We had two days of worry regarding the potential of a trisomy (nonsurvivable) before the chromosome count came back normal.

We got referred to the Colorado Institute of Maternal and Fetal Health, which is located in Children's Hospital and associated with the University of Colorado School of Medicine as well. Due to our move to Denver just over a year ago, we happen to be at one of the best facilities in the country for this type of thing. In another example of how exemplary our care has been so far, they got us an appointment for Friday (only 4 days after the original ultrasound!). We spent all of yesterday at the hospital getting a fetal echocardiogram (everything came back normal for the heart), a fetal MRI, and yet another ultrasound.

We went into the family meeting at 5:30p to hear our girl's prognosis after the doctors had had a chance to talk about all their findings and put them through a complex equation that gives a likelihood of survival. Because it seemed like our case was leaning toward being "isolated" (having no other complications/malformations besides the hernia), I was hoping for something in the 60% range. The two big indicators we were still waiting on were whether the liver was herniated (bad) and the LHR (lung head ratio). The LHR compares the volume of lung tissue they can see on the MRI to the head circumference to determine how much lung has managed to develop compared to normal for that gestational age.

We were delighted when he didn't keep us in suspense and started the meeting by saying that, based on all of the factors, they currently believe her chances of survival are 90%! There is very little liver involvement, her right lung is fairly well developed, and her left lung is doing fairly well, considering how little space it really has. The LHR is currently .7 but they're going to have to do another test at 25 weeks, which is really the time they can get a more meaningful reading. He's hoping it could get as high as 1. (For reference, above 1.4 is a very mild case, below .7 - when measured between 23 and 28 weeks - is quite underdeveloped.)

If she survives birth (we'll either induce or have a Cesarean at Children's on about June 15), there will be a critical 2 weeks or so where they will be supporting her transition to living outside the womb and doing everything they can to relax her and allow her to stabilize. If she survives to that point and stabilizes enough they will be able to do the repair surgery. If all goes well, she could be a fairly normal little girl after overcoming a few developmental delays and other challenges in her first couple of years. If given the space and time, lung tissue can actually grow and fill the space so she wouldn't have respiratory problems.

Not exactly how we were planning on bringing our second girl into the world but we have hope now, which I did not think we were likely to have early in the week. We'll see what the next few months bring.



1 comment:

Edwards/Jackson said...

Liz,
That is a lot of information- overwhelming to be sure. I can only imagine how you and Q must be handling the ups and downs. I'll be thinking of you and your precious 2.0. Take care of yourself.
Jamie