Cone Procedure
03/06/10
Hi all,
My daughter, Katie, a twin, was diagnosed at birth with EA. She is compensating well without meds but we have always known she would need surgery. The plan being, as with most, wait until she isn’t coping, as close to adult size heart as we can get, and then go in for repair/replacement. Like all of you, I hit the info highway as hard as I could and have been stopping in for updates for the past 6 years. Two years ago, there was a post about the cone procedure….and the research I did following that made my heart skip…really!….a procedure that has such incredible success rates is truly more than we were ever allowed to hope fore. So, began the long process of trying to change minds….what if we just sent her stuff to Dearani and the Mayo, just to see if she is a candidate. Fine, our cardiologist did so, but our surgeon is reluctant. Mayo says yes, she is a candidate. So mom says, “We’re going”. Cardiologist says just wait, lets talk to the surgeon and see what we can come up with. Dr. Ross, our surgeon from Stollery in Alberta Canada decided that this was a good procedure and western Canada should learn it so would we be willing to have Katie operated on with Dr. Ross assisting Dearani in Edmonton. Sure, whatever, just get it done. Now Dr. Dearani has not responded to repeated requests for contact but a Dr. del Nido from Boston has agreed to do Katie’s procedure in Boston. I have done a lot of research on Dearani but can find less on Dr. del Nido and his results. Does anyone out there have some information on Harvard and/or del Nido’s publications/results.
Thanks, Alison in Canada
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Alison, I am so sorry I have only just seen this post of yours some six moths later. Our son had the cone surgery w/ Dr. Del Nido in Boston in June of 2007. Our son Will, now 6.9 years old, was 3 1/2 at the time of the surgery. We live about 25 miles north of Boston and have been patients there since I was 19 weeks pregnant w/ our little guy. Dr Del Nido was GREAT, the surgery sent very well for our son and the cone has been exactly what I wanted for his severe Ebstein’s.
If your daughter Katie hasn’t already had the surgery or you have any questions, please do not hesitat to contact me via our son’s Carepage (www.carepages.com our son’s page name is willparker2003 It is a sign in site and they will send me an email that you have requested to read his page and as soon as I get that I will approve and we can communicate any questions or things you want to know.
Our son just graduated from Kindergarten this spring and had a great year. He played soccer, basketball and will finish his baseball season next week. He keeps up well enough and if you were not told, you would never know right now he had a heart condition. We were very very pleased w/ Children’s Hosptial in Boston, as always, and the surgeon and our cardiologist Dr. Gerry Marx. I hope Katie is doing well and you have found some answers already.
Warmly,
Paula/ Will’s mom
Just north of Boston, Massachusetts, USA
Comment by Paula C — July 28, 2010 @ 3:27 am
Hi Paula,
I couldn’t find your carepage so am trying this way. We are on our way to Boston to have the cone done on January 5! I am so excited, so terrified and have sooo many questions. If you can tell me how long the recovery for your son was? We are all going down for the surgery, and then my husband will stay with Katie for the last part until she is released to leave. We aren’t sure what to expect? She is a super strong 7 year old. Would she be out for months? Back at school before year end if all goes well?
Thanks for any info you or anyone who has experienced this surgery adventure before.
Alison
Comment by Alison Laidlaw — December 27, 2010 @ 5:39 am
I would like to make contact with either one of you. My daughter is 6 years old and moving toward the cone procedure with Dr. Del Nido. Please email me (vz at nziagency dot com)
Comment by chuck — May 31, 2011 @ 1:04 am
Allison,
thank you for your post, my son was born with EA 7 yrs ago and we/ his doctor has just told us about this “new” procedure called the cone procedure and is really excited about all the results that has come from it, she has suggested it to us and here i am looking for all the info on it that i can and have found that there have only been 2 death after having the cone procedure. next month we hope to be another satisfied cone procedure recipient.
again thank you for more info on the matter as it scares me to death.
jones family in oregon
Comment by kevin jones — September 1, 2011 @ 11:45 pm
Allison,
Don’t know if you still check back to this page, but would love to hear how Katie’s surgery went. My 6 month old baby Claire, who is also a twin, has EA and had the Glenn procedure earlier this week.
Hoping to get her older in order to repair the valve later.
Caryn
Comment by Caryn — February 23, 2012 @ 9:08 pm
Hi everyone,
Katie’s surgery was a success. She had the cone done with Dr. del Nido on January 4, 2011 and was back at school in Canada by the start of February. She is energetic and healthy. All follow ups have been positive and no complications. If anyone has questions please email me, I would be happy to share our journey with you. I know this is a terrifying trip but we aren’t on it alone!
I realize I just kinda left this thread hanging
Take care,
Alison
Comment by Alison Laidlaw — February 25, 2012 @ 3:50 pm
Hello all, my son as I mentioned earlier had his cone procedure done in Portland Oregon by DR LANGLEY in Dec. And his 2nd check up was great as well . We are very pleased with his health progress and wish you all the best as it is a very stressful time in your lives and we are here if anyone needs to talk.
JONES FAMILY
IN OREGON
Comment by kevin — February 27, 2012 @ 9:45 am
can i ask what the cone and glenn procedures are?
Comment by bulwellbiscuit — March 14, 2012 @ 9:01 am
Hi all!
I am so excited to see all these posts about the cone procedure and it going so well! I’m actually in tears now writing this. My son was born with severe EA and we didnt know about it until he was about 4 hours old. Today, he is 7 months old and doing well! We thought he would need surgery at 1.5 weeks old and were flown emergently to Ann Arbor, MI for open heart surgery. Motts Children’s Hospital kept us there for almost 3 weeks, pushed him to his limits and sent him home with no surgery! Last Friday we had his cardiologist appointment and she said he is still doing wonderfully so far. She introduced us to this “Cone” procedure used after infancy and I would LOOOVE if you all could share with me your stories. My email is chelsea.stensland@gmail.com. I would appreciate any/all information that you have!! Thank you so much!
Comment by Chelsea Stensland — May 8, 2012 @ 2:50 pm
Katie is playing soccer…with kids 3 and 4 years older than her! She keeps ups and works hard. Her last check up was very good, everything is great. We went to Florida on Spring Break and she did every roller coaster at Busch Gardens and Universal! She even wore her little bikini without worry as her scar is so small and faint now, only a year after, that we tease her that anybody who gets close enough to see it better be her Cardiologist or husband! At the last clinic visit, another cardiologist stopped Katie and said, “So you are the famous Katie Laidlaw. Because of you, I have a patient getting the cone next month in Edmonton with Dr. Ross”. So, EA kids in Alberta, and Western Canada don’t have to make the trip to Boston anymore to have their miracles. Katie however, is still a die hard Boston Bruin Fan and there’s not changing her mind. Even if the Cone is done in Edmonton now, she is never going Oilers!
Alison
Comment by Alison Laidlaw — May 9, 2012 @ 1:52 am