Hope and Help for Eden Rae Kulas
In December Rachel and Nick received the shocking news that their baby had a rare and serious heart defect, Hypoplastic Left Heart Syndrome (HLHS). Babies with this syndrome have underdeveloped left ventricles and must undergo a minimum of three open heart surgeries in the first few years of their life for a chance at survival. A heart transplant is also often needed down the road for these children. Baby Kulas has additional heart defects that make her case especially complicated. These include mitral stenosis, atrial atresia and a restricted atrial septal defect (ASD). The atrial septal defect is how babies with HLHS pump oxygenated blood to their organs and survive. If Eden’s ASD becomes more restricted it mayrequire surgery while she is in utero. If it remains in its current state she will need emergency surgery within 24 hours of birth to have a chance at survival.
Rachel and Nick are exploring all options to make the best decision for their daughter, whom they have named Eden Rae. This may involve trips to Texas Children’s Hospital in Houston, TX where they have treated more severe cases like Eden. If Eden remains a candidate for surgery it will involve multiple long hospital stays, time off from work for Nick, and Rachel will likely need to leave her job, at least for the foreseeable future in order to care for Eden. Eden’s first hospital stay alone will be a minimum of two months, and will involve in depth training for Rachel to learn to care for her baby’s special needs.
Rachel and Nick relive the heartbreak of their daughter’s diagnosis every day. During this remarkably difficult time the finances needed to try to save their daughter’s life should be the last thing they have to worry about. I’m hoping to reduce this burden for them so they can focus on what is important— Eden.
If you have any questions regarding Eden’s diagnosis or treatment, feel free to reach out to me (Amanda) personally. I’m hoping to reduce the burden of messages and questions to Rachel and Nick as they are already overwhelmed during this time.