2018 Just for J Holiday North Texas Recipient
Evelyn was born on July 14, 2015 with a Congenital Heart Defect called Hypoplastic Left Heart Syndrome along with Pulmonary Stenosis.
HLHS is a birth defect where the left side of the heart does not grow properly. This restricts normal blood flow and the treatment path includes three open heart surgeries . Although surgeries are only temporary and they do not "fix" the heart, they can lead to many years of a "normal" life.
Evelyn had her 1st open heart surgery, the Norwood, at 6 days old. After spending 34 days at Cook Children's recovering and working on eating she was able to come home!
At the end of October, Evelyn started to show signs that she was ready for her 2nd surgery, the Glenn, so she was admitted back to Cook. Evelyn had a heart catheterization and then had her 2nd open heart surgery shortly after turning four months old. This surgery didn't go as planned and was considered a failure. She came out of the operating room with oxygen saturations in the 50-60s (normal for her condition is a 75-85 range) and after a few days of giving her time they stayed the same. They found during another heart cath that her left lung wasn't oxygenating blood like it should. She then went for her 3rd surgery to place a shunt in her heart that instantly made things better. Evelyn took some time recovering and after some feeding issues she had another operation to have a g-button placed. After a 74 day stay she was released again.
At around 8 months Evelyn's pulmonary stenosis started to appear more prominently. Pulmonary stenosis causes narrowing of the veins that take blood from the heart to the lungs. It can be corrected, but sometimes it is only a temporary fix. Her surgeon felt it best that he at least attempt to operate on her veins. After another heart cath, Evelyn underwent her 4th open heart surgery at 9 months to tackle her left pulmonary veins.
Ultimately, the surgery was unsuccessful and Evelyn's pulmonary stenosis continued to reoccur. Evelyn had 5 more heart caths between age 1-3 to monitor her heart and veins. At times interventions were done to balloon and stent veins to keep them open. With all things considered Evelyn maintained a fairly normal childhood. She worked with OT, PT, and speech to reach age appropriate milestones. By age 2, she had caught up with her peers developmentally and was eating fully by mouth.
The last surgery, the Fontan, usually takes place at around 3, but Evelyn's cardiologist didn't feel she was ready. She thought she may fail if they tried. The pressures in Evelyn's left lung needed to be better before a Fontan would be considered. With the goal of lowering the pressures, her Cardiac team decided to replace the shunt in her heart with a larger one. Then after a consultation with her surgeon a Tricuspid valve repair was added to the list to correct her severe regurgitation.
Evelyn went in for her 5th open heart surgery on July 19th right after her 3rd Birthday to replace her shunt and repair her Tricuspid valve. This surgery started a spiral of unforeseen complications. Evelyn endured 2 more open heart surgeries, 2 chest exploration surgeries, 3 more heart caths, coded two times, cardiac tamponade, discovery of an old stroke, and several intubation/extubations. During the next few months rehabilitation was the focus. Evelyn's heart proved to be tired and it was starting to show. Doctors weren't able to wean her off IV heart medications or her high-flow oxygen and she wasn't recovering like she should. In late October, her surgeon reviewed Evelyn's data and determined there were no more surgical interventions that could be done. Her Cardiac team at Cook decided it was time for a transplant evaluation, so she was transferred to Children's Medical Center in Dallas.
Evelyn got approved for transplant and is currently listed awaiting a heart. This is a huge blessing because some centers would have turned her away because of her pulmonary stenosis. Evelyn has proved time and time again that she is resilient. Her sass and feisty spirit have helped to see her through some difficult times. Evelyn is fun loving 3 year old that is full of life, has never met a stranger, and loves to learn new things and about the world around her. As we wait for Evelyn's new heart we have hope for what her future will hold. God has a plan for Evelyn Elizabeth and we're excited to see it unfold.
Our family plans to use the funds that are raised to help with medical expenses. Any well wishes, prayers, or positive thoughts for Evelyn and the donor family would be appreciated. - 2018
You can follow Evelyn's story at Evelyn Elizabeth: Heart Warrior on Facebook.
You can support Evelyn by purchasing our Giving Tuesday T-Shirt or registering for our Purposeful Painting Event below. You can also donate directly to our website in lieu of Evelyn Elizabeth: Heart Warrior by donating here.