Update as of January 21 at 8:45 AM - one of the pediatric cardiologists in the states who has reviewed Sonia's echocardiogram has urged us to pass on the following update:
"Sonia's echocardiogram was NOT normal. She has a ventricular septal defect which now makes everything make more sense. She does likely need surgery. He requested that I update this to read that she has a "ventricular septal defect..... possibly an atrioventricular canal defect."
More to come as I have it.
Okay, here's some more details as I know them (relayed from Susan Westwood)
- Sonia is a 4 month old who has been with us since she was 6 days old.
- We suspect that she has downs syndrome and shows signs of an obstructive airway condition and congestive heart failure.
- She has been assessed by two cardiologists in Haiti.
- An echocardiogram showed a patent foramen ovale (don't ask me what that means - but the important people will know) but no other structural defects.
- Initially she responded well to cardiac medications (digoxin and lasix) but she is now critically ill for the third time since she was admitted to GLA as a 6 day old infant.
- Minor viral infections cause her to develop a barking cough and severe respiratory distress.
- She then goes into respiratory failure and has needed CPAP on two occasions since she was born.
- Based on her current condition , Susan and Dixie will probably have to start her on CPAP again today.
Our Haitian pediatrician reviewed Sonia today and she strongly suggests that we obtain a medical visa so that Sonia can be assessed by a pediatric pulmonologist, pediatric ENT and pediatric cardiology specialist outside of Haiti. She said that it is not possible to safely perform any further investigations or treatments in Haiti.
Susan and Dixie are both afraid that Sonia will die unless we can get her to North America soon.
So what can you do to help? A few suggestions:
It goes without saying (but I'm going to say it anyway) - Pray for Sonia and for Susan and Dixie as they fight to keep her alive. Pray also that the right doctors and medical facility will be found. Pray also that the governmental regulations for getting her a passport and visa will go smoothly.
If you know anyone who has connections to any of the medical specialties spelled out above:
- Pediatric Pulmonology
- Pediatric ENT Specialists
- Pediatric Cardiologists
Call them and ask them if they and the facility that they work with would be willing to donate the care for a 4 month old from Haiti who will probably die if she doesn't get the care that's only available outside of Haiti.
If there is any interest in it, call me at (616) 884-8901 and let's talk about what is needed to get things done.
Okay, that's a lot of information packed into one quick post. Read it through, say a prayer for Sonia (and Susan and Dixie) and then ask yourself - who do you know who can help us save Sonia's life?
Let me know what you come up with.
Thanks in advance for your concern for Sonia.
Posted on Wed, January 19, 2011