*Received my new heart on June 22nd at 1am*
Åskar surprised us when he was born (on April 20, 2021) with two things … he was just a little guy weighing 5lbs 9oz and his heart wasn’t formed correctly.
Åskar’s heart had several problems which got him the diagnosis of Hypoplastic Left Heart Syndrome. His aorta was really narrow, his left pulmonary artery was also narrow and his tricuspid valve has severe regurgitation.
When he was only 1 week old on April 27, 2021, he underwent his 1st open heart surgery called the Norwood at Phoenix Children’s Hospital. After a little over a month, he was finally discharge from the hospital. However, because of the delicate state Åskar was in we had to stay in Phoenix until his next surgery. His second open heart surgery, Glenn, was done on Oct 6, 2021, and thankfully he was discharged 8 days later.
We could finally bring our baby boy home.
Åskar thrived at home! He was able to get off the NG tube after 2 months and was eating all by mouth. He was crawling everywhere and starting to walk along the furniture.
In February through his regular check-up, it was found his heart was slowly declining in function. A heart cath was done at the end of March.
His heart did not like that at all; he went into arrhythmia followed by 2nd degree heart block and needed the ventilator to help his heart pump enough blood to his entire body.
Doctors decided Åskar needed a new heart.
Åskar was put on the transplant list on Wednesday April 6th at Status 1A. We now wait for his perfect heart to be available.
We hope he will get his new heart soon and recover so he can back to being the sweetest 1 year old around.
We have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider donating to COTA in honor of Åskar.
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.