The Kelley Family

Hello all, a family that I adore is in need of some support, conquering many battles while caring for their two daughters. Their newborn, Miss Lila, was born in May and has been fighting a battle with heart deficiencies. Mom and Dad have had to take time off work and taken on extra expenses in order to stay close to their strong baby girl.

“February 3rd 2023 at our 20 week ultrasound we found out that we will be having a very special girl and that our lives will be changing in so many ways. After many ultrasound, echos and a series of blood work and procedures we finally has some answers. Our little miss Lila has a rare chromosome defect mosaic trisomy 16 which is what we believe lead to her very complex congenital heart defect. At 36 weeks she was ready to make her entrance into this world. Lila spent the first month of her life in the NICU at Mott Children’s Hospital. At one month old our girl underwent what was suppose to be a pretty routine procedure to put a stent into her heart to re route blood flow, while in the cath lab Lila’s took a turn for the worse and had to be rushed into emergency open chest surgery where a BTT Shut was placed instead of a stent. Our girl recovered quite well and after 2 months in the hospital we were finally to take her home. Our girl was home for 3 short weeks before we had our first ambulance ride back to the University of Michigan for respiratory failure. They found that she has a rare congenital Morgagni diaphragmatic hernia that will need surgical repair. While waiting until she was stable to undergo anesthesia Lila again took a turn for the worse, she stopped breathing and had to be intubated (put on a breathing machine). We are not sure what caused her respiratory failure, and while we were waiting for answers Lila started to have seizures. Come to find out the seizures were the result from a stroke she had. Currently Lila is still intubated and sedated while the neurological team works on getting us answers and what the future will hold for our little girl.”