1st off, for anyone who hasn't already heard, our expectant little bundle has been named:
Payton Dani
Since our trip to Women's hospital in Vancouver here are the things we have learned/confirmed with baby Payton (rather, we know as best as possible using diagnostic tools such as ultrasound) is this:
- Her stomach and a portion of her bowels (not sure how much) are in her chest cavity.
- Her liver is still in her abdomen (important because a liver in the chest cavity is bad since the liver is solid and thus won’t allow any give for lung growth).
- Her heart is on the right side of her chest (we have attached a very unique u/s photo of a cross section of Payton’s chest cavity showing her heart and stomach along the same profile – we hope that it’s a cool picture she’ll be able to share when she’s older).
- Her left lung is not expected to grow. (ETA Aug 2013: this information is incorrect. While the lung will continue to grow, the number of lobes may be less than a normal person which may result in diminished lung function. Still, the lungs will grow with the child to varying degrees)
- Currently, her right lung is “favourably” developed which is the determining factor for our current 70-80% survival rate.
- We have been given a LHR of 1.2-1.3 (more on this measurement later)
- We have been given an observed LHR of 61-85%
- Since Chromosomal abnormalities are high with CDH babies we opted to do an amnio when we learned of Baby Payton's condition. Preliminary results indicate no chromosomal abnormalies.
There isn’t a lot more that we will know as the pregnancy progresses as the statistics used to determine survival rates are compiled from babies at our current gestation. Thus, even though we may have additional information as the pregnancy progresses (ie the liver may move up later, or the left lung volume may decrease/increase relative to its expected growth) we can’t determine how these changes will impact her survival as research on CDH comparing these variables later in pregnancy are not well studied.
Ultimately, we simply won’t know until she’s born how well she’s going to do.
These are the expectations we currently have once she’s born:
- She will require surgery to remove her abdominal contents from her chest and repair the hole in her diaphragm.
- Estimated NICU time with our current assessment is between 1-2 months
- Survivors of CDH can live a ‘normal’ life including sports despite living on one two lungs, one likely less functional than the other (makes you realize how little we use our lungs) and the prognosis for living a healthy life in the long term is good (the grey area is small with CDH babies in that they either do well or they don’t survive). ETA: again, not true. Many that do survive have multiple issues through life though often these issues are not life threatening.
So while we have a lot of uncertainty in front of us, we also have a lot of wonderful things to hold on to to see us through.
We will do our best to keep people informed if we learn much more (or how we are doing).
We expect the pregnancy to progress without many more surprises and should remain uneventful until delivery in August (or as close to August as possible). Fow now we leave you with an ultrasound scan of baby Payton (one showing her profile) and another of a cross section along her chest where you can see her heart and stomach along the same plane.
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