At Nicole’s 20-week ultrasound we learned we were having a boy. We were thrilled to tell our family and friends the baby’s gender, however, the day after the ultrasound we were contacted with the news that the ultrasound report revealed some concerns about our baby. Although doctors couldn’t with certainty tell us what was wrong with our son, they could identify a cystic hygroma on his neck and enlarged lateral ventricles in his brain.
When presented with the option to terminate we refused. Instead, we turned to prayer believing that God, not us, should decide whether our son was to be born. For the remaining months of pregnancy, we prayed for our son and thanked God for the blessing of his little life however long or short it may be.
On October 26th our sweet son Quinn was born. After a multitude of tests including an MRI, an echocardiogram, and an ultrasound, doctors were able to identify a number of birth defects in his body that will need to be surgically repaired.
Thankfully, however, they have found nothing that is fatal. Through genetic testing, it was discovered that Quinn has a very rare genetic deletion where 263 of his genes are missing. This type of genetic deletion only occurs in less than 1 in one million people and there is no record of this exact deletion in the international database. It is this deletion that has caused the many birth defects in Quinn’s body. With the proper surgeries and therapies, however, Quinn should be able to have a positive quality of life.
When he finally opened his eyes and looked at us for the first time, we fell in love with this little guy whose medical diagnosis remains much of a mystery-even to the NICU doctors and nurses we have had to entrust with his care. He has already amazed them multiple times. Quinn first surprised them when he was able to breathe off of the ventilator, and then he surprised them when he pulled out his catheter with his foot and showed us he would pee fine. Even his birth was a surprise when he beat the odds by being one of the 10% of babies with cystic hygromas who survive birth.
Last week, Quinn, had reconstructive surgery on his anus and was also given a G-Tube. Our mighty Quinn still has a long road ahead and will need many more surgeries including surgery on his cystic hygroma, his spinal cord and possibly even his brain. We go to his bedside day and night to hold him, sing to him, hold his tiny hands, and be his advocate amidst a sea of differing medical opinions and insurance challenges. Our beautiful five-year-old daughter Ayven got to meet her brother briefly in the hospital (young children are only allowed in the NICU for fifteen minutes at a time), but we still struggle with the right words to explain to her why her brother can’t come home yet.
We long and pray for the day when Quinn will be released to us and we are thankful for how he continues to get stronger every day. We know God gave us our son for a reason and we are committed to doing everything we can to get him excellent care and the best chance at a full and happy life.
Even with some insurance coverage our out of pocket costs are extremely expensive. Our resources are dwindling quickly and we are concerned about the future. We love our little Quinn so much and just want to get him the best care possible. We have never asked for any type of financial help for anything before, but this fight for Quinn’s life has humbled us to the core.
Our family would be so blessed and honored by anything you could offer to help Quinn. Please also share this page on your social media accounts and help us share Quinn's story. Our sweet boy is already a miracle baby who has defied the odds just by being born. Will you be a part of his story? ❤️