Tuesday, February 04, 2014
Rotchina and OSF
Rotchina, January 2014 (Photo by John Carroll)
In August 2000 I brought a nine month old baby girl named Rotchina to OSF-Children's Hosptial of Illinois (CHOI) in Peoria. Rotchina suffered from severe pulmonary valve stenosis. This means that she was born with a very small pulmonary valve which was restricting blood flow to her lungs.
An echocardiogram performed at OSF-CHOI in 2000 revealed a huge pressure gradient (174 mm hg) across a tiny pulmonic valve. (A normal pulmonary valve would have no gradient.) This meant that their was a huge block at the pulmonary valve as blood was rushing from her right ventricle through the tiny pulmonic valve on its way to her lungs. And her right ventricle was too big because it had been doing so much work to pump the blood through the small pulmonary valve.
In the Catheterization Lab at OSF the pediatric cardiologist and his excellent team at CHOI inserted a catheter into a major blood vessel in Rotchina's thigh and threaded the catheter up to her tight pulmonic valve. When it was determined the catheter was in the correct position, the cardiologist inflated a balloon at the end of the catheter and popped open her abnormal pulmonary valve. The valve area increased immediately which allowed much more blood to flow to her lungs with each heart beat.
The procedure was successful and Rotchina was released from the hospital the same day and went back to her host family in the Peoria area.
Rotchina stayed with this wonderful family until she was medically cleared and then we took her back to Port-au-Prince to be reunited with her mother.
Rotchina is now 14 years old. She and her mother survived the Haitian earthquake in 2010 which destroyed most of Port-au-Prince.
Recently I have been hearing that Rotchina has not been doing well. I called the CHOI cardiologist who opened her valve when she was a baby and described Rotchina’s situation now. He offered some thoughts but he sounded shaken to hear her name again. He wished me luck in finding care for Rotchina.
So I had another OSF cardiologist review a recent echocardiogram that Rotchina had in Haiti. The cardiologist noted that Rotchina now has severe pulmonary valve regurgitation which means that her pulmonic valve, which was tight when she was a baby, is now very leaky. And this cardiologist stated that she may need to have heart surgery to have a new pulmonary valve placed.
But how would I get this done at OSF which is where it should be done? For a decade OSF has denied all of my Haitian Hearts patients from ever returning to OSF. (The surgery that Rotchina may need is not done in Haiti.)
So over a month ago I asked another friend of mine and a long time friend of Keith Steffen, OSF-Saint Francis Medical Center's CEO, to call Keith and ask him to accept Rotchina back to OSF for a complete cardiac work up and surgery if needed.
I will spare you the morbid details but after weeks of faithful efforts by my friend with Keith Steffen and Margaret Gustafson, Executive Director of CHOI, OSF did not remove their embargo against Rotchina. It was a painful lesson for my friend and he saw up close and personal how OSF works for Haitians kids.
The other day in Haiti I examined both Daniel and Rotchina. She is now a tall 14 year old adolescent who is very pleasant and polite and she and her mother appeared fine. Her mother was carrying the original medical records from OSF-CHOI like they were treasured documents.
Rotchina’s mother states that Rotchina is a good student but does miss school due to health reasons. Her mother also reported that Rotchina is short of breath, has heart palpitations and chest pain. ( I hear these complaints almost everyday in Haiti. Sometimes they mean something significant and sometimes they don’t.)
Rotchina's physical exam revealed normal vital signs but she did have a loud murmur over her pulmonic area that sounded like her pulmonary valve is indeed leaky as the OSF cardiologist mentioned when we reviewed Rotchina’s echocardiogram in Peoria.
But as mentioned above, Rotchina is quite tall and I noticed she has long arms and skinny fingers. And she wears glasses. I asked myself if she has Marfan’s Syndrome.
Marfan’s is an inherited connective tissue disorder with many forms. Marfan’s can cause problems in multiple systems. Hearts can have leaky valves, arms can be long as can fingers, and there is high incidence of visual problems associated with Marfan’s.
Thus, Rotchina needs a work up, not only for her pulmonary valve to see if it needs to be replaced, but to determine if she has Marfan’s as well. If she becomes pregnant in the next few years and she DOES have Marfan’s, she could die in pregnancy. (Women with Marfan's can be high risk for rupturing their aorta during pregnancy and need to be monitored carefully.) But what do I tell Rotchina and her mother when she has NOT had a proper medical workup?
So Rotchina, like Daniel, is stuck in Haiti with nowhere to go. She needs to come to OSF so the physicians can work her up and treat as appropriate. The OSF Sisters first first mission value statement reads: "Personal worth and dignity of every person we serve regardless of race, color, religion and ability to pay." So I think this should cover Rotchina too.
"We are not likely to recognize the ravages of inequity because of our isolation from one another, but they are there." (Charles Blow, New York Times)
John A. Carroll, MD