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Cameron’s Story

Cameron Edward Ulrich was born on June 15th, 2006 with a complex congenital heart defect. 
He is a brave boy who endured so much but always managed a smile.

Cameron was born with a condition called "situs invertus" or “heterotaxy” where the abdominal organs in the body were reversed (organs from the right on the left and left on the right). This condition is not in and of itself detrimental; however, only 2 of the 4 chambers of the heart had inverted (atrial-ventricular discordance). Also, Cameron had both arteries leading out of the heart on the right chamber instead of one out of each chamber (double outlet right ventricle). This would lead to no way for the heart blood to flow out of the left side of the hear texcept for the hole “vsd” that was between the 2 lower chambers of the heart.These physical defects appeared to be what lead to a 2:1 heartblock where half the heart was beating at 130 and half at 65 beats per minute and was what the doctors originally discovered that helped us discover his condition. Cameron had a pacemaker and pulmonary banding surgery at 12 days old to give him sometime to grow before he was supposed to have another surgery (double switch) to correct the physical structure of the heart. He was able to go home after 3 ½ weeks in the hospital.

On January 4, 2007 Cameronhad a heart catheterization to take measurements and help doctors plan his next surgery. As of March 2007 the results of his cath showed that he would probably not need surgery (double switch) until he was 8-10 years old.  He lived a pretty normal life attending pre-school/school and playing with his sister, Sydney.  On June 29, 2011 Cameron had his pacemaker generator replaced.  This was to last at least 10 years.

On April 17, 2012 Cameron had a CT angiogram done for planning for surgery.  Unfortunately, a week later he was hospitalized for decreased heart function making corrective surgery impossible.  We sought some opinions and decided to work with Boston Children’s Hospital.

On August 7, 2012 Cameron had a bi-ventricular pacemaker placed (in Boston) for CRT therapy (basically a way to help the heart remodel itself in hopes of gaining better function).  It was discovered that his old leads from the old pacemaker were pinching off parts of his coronary artery thus causing ventricular dysfunction.  While surgery went well, recovery did not probably due to the low function of his heart.  On August, 8 (our 14th wedding anniversary) Cameron suddenly coded and required CPR for 2-3 minutes.  It took three weeks to recover before he returned home at the end of August 2012. He attended first grade for about a month when his health declined and he was hospitalized again.   On October16, 2012 he was transferred to Saint Marys Hospital at the Mayo and was listed for a heart transplant status 1A on October 22, 2012. 

On October 29, 2012 Cameron fell while returning to bed which started a series of four different codes.  He ended up being placed on ECMO (life support).  As a result of the CPR he suffered a mild/moderate stroke which affected his left side.  He rallied back and was able to be extubated while still on ECMO (Mayo record).  He waited for 7 long months on ECMO (199 days which is well beyond the world record of 117 days).  While on ECMO he did his best to stay strong with daily therapy including walking!

On May 15, 2013 in the nickof time he received his donor heart. Again he rallied and worked hard to get better.  His health had significantly declined duringthis ordeal and he had many issues including an aortic tear that had to be repaired. He was in kidney failure as well as having many other issues.  On July 31, 2013 he stopped breathing in his sleep and was unable to be resuscitated due to the extensive damage the ECMO had done to his body.  He is our brave warrior angel and will be missed until we meet in heaven again.


Latest Journal Update

CHD, CHD go away!

It has been one of those weeks where it feels like CHD is crushing me.  On Sunday we lost a dear friend we met at Mayo.  At the tender age of 11, miss Aryanna joined Cameron and so many other heart angels we know.  This is the reality our family faces.  We will continue to lose friends to this horrible disease.  I have some ways you can help us fight back.
First, Aryanna's family has incurred many medical costs, time away from work, and now a burial for their sweet child.  My dear fellow heart mom, Linsey Rippy and I have created a fundraising site to help them with some of these expenses.  If you could find it in your heart to donate (even a dollar or two) it would really make my day. The link is http://www.gofundme.com/aryannawiebke and you can donate securely with a credit card. 
Second, Cameron's Crew will be walking at the Twin Cities Congenital Heart Walk on Saturday, September 20th. 
Please consider joining our team and/or donating. Proceeds go towards research for Congenital Heart Defects. I have hope that we can improve and lengthen the lives of all the children and adults affected by this ugly, complicated monster. There needs to be much more research and awareness. CHD takes the lives of more children/adults than all the childhood cancers combined.  Follow this link to help fund research: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1106840&supId=410579775 
If you are not able to help financially would you consider passing on these links to friends & family that might be able to help.  Thank you so much for helping us fight CHD!