Tyler was born on June 14, 2000. Just twenty eight hours after he was born we found out we were parents to a CHD baby. He was born with Hypoplastic Left Heart Syndrome. Tyler had 4 open heart surgeries before the age of three years of age and over a dozen and a half heart catch surgeries from birth to today.
Tyler has also developed P.L.E. (Protein Losing Enteropathy) after his last open heart surgery. In April of 2014, we found a large blood clot in his lower left chamber of his heart and his P.L.E. had returned with many more complications.
His heart was failing due to his P.L.E. He still had a large blood clot in his heart. He also had been diagnosed with a Pituitary Gland problem (which resulted from the steroids used for his P.L.E.) and osteoporosis from the protein loss. His body had been taking protein from his bones. He ended having two broken bones in his spine as a result of improper protein levels. His hip also showed major calcium loss. Tyler’s immune system started failing him from the P.L.E. and his oxygen levels dropped in the mid 80’s causing him to feel sick every day.
Tyler had been put on the heart transplant list in July of 2015 as a Status 2. Tyler got a IV port put into his heart in August to help his heart failure and P.L.E. loss until his new heart arrived. The medication he was receiving through the IV was called Milrinone and when that medicine is given at a high dose, it qualified Tyler to be listed as a 1A on the National Transplant List.
Tyler was listed on October 7th 2015 at Children’s Hospital of Milwaukee on a Status 1A (Top of the list, up to a 3500 mile radius).
On November 24th Tyler received his angel heart. Tyler experienced post-transplant complications and sadly he passed away on December 8, 2015.
If you are not already an organ donor-we strongly encourage to become one today and share your decision with the people you love.
This was only made possible through the selfless and precious gift of organ donation. On one families darkest day they made the most thoughtful decision…to help other children live on. We thank you dearly for that choice and hold your family up in prayer. Your child lives on in others!!