Almost 1 year ago I brought you the story of Sonya Danilenko, a little girl from Zaporozhye, Ukraine who was dangerously ill with portal hypertension and subsequent bleeding esophogeal varices. Sonya’s mom, Tatyana was searching for information on the Rex Shunt procedure and happened upon this blog where she learned of the wonderful work of a specialist at Children’s Memorial Hospital in Chicago Illinois by the name of Dr. Riccardo Superina. Initially, after some very close calls in the Ukraine, Tatyana, who is an emergency physician herself, decided to take Sonya to Germany to see if doctor’s there could assess and perform this rare procedure. As is the case for many countries in the world, Ukraine does not have the resources or specialists that are able to handle such a complex condition as portal hypertension. Unfortunately the German doctors were also unable to perform the operation, so Tatyana made arrangements to send her imaging to Dr. Superina and as they say, “the rest is history”.
After successfully raising the necessary funds to fly to the US (a story in itself), Tatyana arrived in Chicago with Sonya at the end of August 2011, and shortly thereafter Sonya had her surgery. In the 11.5 hours of surgery Dr. Superina attempted to connect the shunt 5 times, but it clotted off almost immediately on every try. In the end he ended up doing a mesocaval shunt which is the least desirable, but nevertheless it is open and flowing. Sonya is scheduled for her follow-up appointment with Dr. Superina this May in Chicago. She will need to be continually monitored, but so far she continues to thrive. In my mind I credit Sonya’s overall improvement to the great care and expertise of Dr. Superina, the staff at Children’s Memorial, her mom Tatyana, and not to mention the prayers of many people around the world!
In conclusion it seems that both portal hypertension and its dangerous side effects outweigh any attempt at surgical intervention if the candidate is suitable. If what I have been told is correct I think that Dr. Superina maybe nearing around the 140 mark for operations on children with the large majority of those being successful. There are other specialists in the world who have also realized success in treating children and that number combined with what has been done at Children’s Memorial is around 300. I stand corrected on this information so if you’ve heard of anything different please let me know!
To read more about Sonya’s story click the following links:
http://www.portal-hypertension.com/little-sonyas-plight-update/
http://www.portal-hypertension.com/2011/08/28/rex-shunt-for-sonya-update-08-28-11/
http://www.portal-hypertension.com/rex-shunt-sonya/
http://www.portal-hypertension.com/post_op_6_days/
http://www.portal-hypertension.com/sonya-post-op-one-week-later/
http://www.portal-hypertension.com/follow-up-help-for-sonya-post-op-2-weeks/
http://www.portal-hypertension.com/little-sonya-2-month-post-op-update/
An awesome story! Thank you for this update, Clint! I want to say “thank you” to everybody who is following our story and praying for my precious daughter. May God bless you all, dear people! Sincerely, Sonya’s Mom Tatiana.:)))