Welcome to our CaringBridge site. Aaron has HLHS and was born on May 13, 2007. Aaron has had 4 open hearts surgeries to help his tiny heart work efficiently, and he has done very well with them. Thank you for taking time to read, and watch him grow. As always, thanks for the prayers! )
Hi, my name is Aaron and when I was about eighteen weeks old my mom and dad were told that I have a special heart. My heart has a syndrome called: Hypoplastic Left Heart Syndrome (HLHS) and is one of the most complex cardiac defects seen in newborns, and is uniformly fatal without surgical intervention. In a child with HLHS, all of the structures on the left side of the heart are severely underdeveloped. Treatment involves "re-plumbing" the heart to allow the right side to do the work normally done by the left. So far I have had 3 open heart surgeries to help my plumbing along with many heart cath procedures, all of which are done in the Twin Cities or Rochester, MN. There is no long term prognosis for the series of surgeries since the oldest children who underwent them are only in their early twenties. Some children with HLHS eventually require a heart transplant.
Be sure to read the latest in the journal to see how I am doing, view the photo gallery, and drop us a line in the guestbook.
Update as Aaron’s journey changes as he is now on the heart transplant list …
Aaron Erickson is a Moorhead High School student who was born with a rare and complex congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS). With this congenital heart defect, the left side of his heart is critically underdeveloped and the pumping chamber is unable to effectively pump blood to the body. Children with this defect typically undergo 3 open heart surgeries, the Norwood, Glenn, and Fontan, over their first few years of life. Aaron has been a fighter since the day he was born. He underwent his first open heart surgery at just 5 days old. Only six months later, he unexpectedly needed arch reconstruction. Four months after that, he endured a third open heart surgery. All within his first year of life. At three years old, Aaron persevered through his fourth open heart surgery. Since that time, he has dealt with a narrowing of different arteries and his aortic arch, along with heart rhythm problems. In overseeing his condition, he has continued to undergo countless procedures, tests, and monitoring throughout his entire childhood.
In April 2021, at one of his routine cardio appointments, Aaron’s echocardiogram indicated his heart’s function had significantly diminished. Aaron has always been a warrior who displays courage, strength, determination, and wisdom beyond his years as he navigates his HLHS journey. He continued to exhibit these qualities after this challenging appointment when it was evident his body would need a heart transplant to thrive. Aaron was officially put on the UNOS list September 1st and is currently awaiting a donor heart.
During this initial phase of his new heart transplant journey, Aaron and his mom, Holly, will incur travel, housing, and living expenses in Rochester while he attends appointments at Mayo pre-transplant, and additional expenses during the 3 months post-transplant when they will reside in Rochester due to the frequency of required visits. While normally they would stay at the RMH, COVID restrictions would make physical contact with Aaron’s loving dad and supportive sister almost completely restricted. Knowing how much being with his family will be critical for Aaron’s care and recovery, alternative housing arrangements are necessary. Beyond those basic needs, organ transplants are complicated and costly. Even with insurance coverage, there are many expenses that will be incurred that are not fully covered, particularly portions of the lifelong medications needed to sustain the transplant, some physician fees, as well as general care before deductibles are met. Depending on the additional complexities of Aaron’s case once this lifesaving procedure occurs, unexpected post-care expenses are a real possibility as well. Additionally, Holly will need to take extended leave away from her job as a West Fargo teacher, where she is beloved by her students. She has given so much to her students and made such an impact on so many lives, it is only fitting that we as a community are able to give back to such an amazing human and family.
12 years ago today Aaron was still at Childrens Minneapolis recovering from his Fontan surgery which is was on 2/9/10…this surgery is normally a two day hospital stay…his body just wasn’t tolerating this new pathway….
Thankful for this team of humans that helped all of us get to the other side of this journey….the nurse was truly his favorite even though his face says otherwise in the pic…
Hope you are able come out and support Aaron on April 23rd at Heritage Middle School in person or via the live virtual auction soon to be posted here:
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