Thursday, April 12, 2012

Who to talk to when your child needs cardiac care

After spending a little more than two years on the heart parents board at BabyCenter community, I realized that among us we amassed some pretty amazing resources among Cardiac surgeons.  Here are some of the doctors found and their specialties.  These are the people to talk to when your child is diagnosed with a complex congenital heart defect.  

First and foremost, if you don’t know who else to ask, talk to Boston Children’s they have had the most experience overall and are a good starting point.  If your child has been given a poor prognosis and you haven’t talked to at least one of the folks below, contact them now!  

If you have trouble getting a hold of them, talk to other moms who’ve been there and see if they have contacts that can help you reach out.  Sometimes what your doctor doesn’t know can make all the difference.

There are a couple of great resources from US News and World Report.  One is the list of the best Pediatric Hospitals.  The other is a link of the best doctors

Cardiac Surgeons

Boston Children’s

Boston treats very complex CHDs like cardiac malformations associated with Heterotaxy. They are also the experts of pulmonary vein stenosis. 

  • Dr. Del Nido (Boston) - LTGA, Complex CHDs
  • Fetal Interventions - Critical aortic stenosis, some moms on the board had fetal procedures done in-utero to halt the progression to HLHS.  There are amazing possibilities and breakthroughs every day.  You should at least talk to Boston before making a decision on fetal interventions.
  • Boston also has setup a Congenital Heart Valve Center (CHVC) and are continuing to perform some cutting edge procedures and are in the midst of many studies and research projects. Dr. Christopher Baird - director of the Congenital Heart Valve Center at CHB.
  • They have a special clinical trial that is showing some promising results as well as one of the best interventional cardiologists, Dr Locke, who is a magician in the cath lab. 
  • Local Boston Pediatrician - we are with Roslindale Pediatrics - everyone is great - I am including this Pediatrician because the doctors are local to Children’s Boston, someone from their office is there every day checking up on the patients from their practice and are getting any discharge / follow up information.  They also share the medical records so we know that everyone is on the same page for our child’s care. Whenever we have had to go the the ER, they have called ahead to let them know that we are coming.  Our pediatricians are also available on the weekends for "sick" visits which comes in handy for the random fever or suspected ear infection.
Dr. Hanley (Stanford – Lucille Packard) - MAPCAS, TOF, LTGA, Complex CHDs
Dr. Hanley pioneered the unifocalization surgery for TOF with pulmonary atresia and MAPCA's. There are a handfull of others that do it also (though I don't know names or locations), but Dr. Hanley is world renowned for this procedure. If your child has TOF with pulmonary atresia nad MAPCAs do not give up hope!  Talk to Dr. Hanley.  See this BabyCenter post for more information:

Dr. Anne Murphy at Johns Hopkins
Expert on children with complex CHDs and DiGeorge Syndrome.

Dr. Bove (U. Mich) - LTGA, Complex CHDs

Dr. Jonas (DC) - Intra-extra Cardiac fontan, heart outside the body

Dr. Ralph Mosca at NYU performs a hybrid procedure to close multiple VSDs without going on bypass.

Children's Hospital in Omaha also does hybrid cath/surgical procedures. Dr. Delaney (Interventional Cardiologist) and Dr. Hammel (Pediatric Cardiothoracic Surgeon specializing in complex congenital heart disease) are two of the few in the country that perform hybrid procedures (in a cath lab/OR).

Tulane Hospital in New Orleans is the only hospital in the South with a hybrid suite. Dr Yeh, has a survival rate for CoA/ PDA repair that is 100%, overall he's an amazing surgeon and person. He's also an expert in chest wall reconstruction and was part of team that separated a set of conjoined twins.
New Orleans Pediatrician - Dr Evers at Tulane Lakeside peds clinic, she deals with a lot of SN and medically complex kids

Dr. Jeffrey Towbin at Cincinnati Children's Hospital is known for his work with Cardiomyopathy.

Dr. Chris Knott-Craig at LeBonheur in Memphis.  He is originally from South Africa, spent time in OKC and UAB before coming to Memphis.  He is great with complex hearts and pioneered the bi-vent repair for Ebstein's Anomoly.

Dr. Victor Morell at Pittsburgh Children's Hospital has done the most Nikaidoh's in our nation. He is #1 for this treatment of D-TGA, VSD, PS.

Dr. Gordon Cohen at Seattle Children's has done the next, most Nikaidoh's in the US. He was trained by Dr. Morell.

No comments:

Post a Comment