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“We are truly amazed at her progress”
Ashlyn Simmons, Trisomy 13, 1/26/2013, Maitland, FL
Update 11/5/2013: As an update to my initial entry, Ashlyn is still on a heart and lung monitor although the alerts are almost non existent now. She is 9 and 1/2 months old now and has gained significant weight and continues to grow in length. She is 11 LBS vs. 4 LBS when she was born and 22″ long. She continues to continue to develop albeit slowly and she is becoming more and more aware of her surroundings. She smiles and laughs frequently and and is aware when someone walks in the room. We are truly amazed at her progress. Her hearing and eyesight are decent and we will be doing surgery soon to insert tubes in her ear canals to help keep the fluid out. We pray for success. We cherish every moment we have with her as well her 4 year old big sister, Olivia.
========== Original Story =============
Ashlyn was born January 26th 2013, 6 weeks early, because of my wife’s severe preecamplasia. Kristin was found to have severe high blood pressure and protein in her urine during one of her final routine prenatal appts. She was told to go to the hospital immediately where a c section was performed just several hours later. After Ashlyn was born the doctors began discussing some abnormalities that were present in her features and behaviors. We thought they were just being overly precautious because Ashlyn looked fine to us. Approximately 2 weeks later we got the news she had been diagnosed with Trisomy 13- All I heard for the first couple minutes was wamp, wamp, wamp. It was like a bad dream and I was wanting to wake up. Since then she stayed in the NICU with no serious medical issues for about another 2 weeks ( 4.5 weeks total). She was on very light oxygen for a while but it was eventually removed. There are no serious conditions in terms of heart, lungs, brain structure, or otherwise. She has all her extremities and all organs are intact. We brought her home on March 8th 2013 with a heart and lung monitor. It has been stressful at times, as the monitor alerts randomly for heart rate drops and/ or lungs. She tends to desat from time to time and she does have slight apnea and moderate to severe acid reflux . We have to lightly massage her to take a breath from time to time as well. It is now May 12th and we have since done several tests and studies. A sleep study showed she has slight apnea and we are awaiting test results from a swallow study to see if reflux is causing airway issues. Overall, Ashlyn is doing well considering the statistics. All we know to do is pray and pray some more. We have reached out to everyone we know and even some we don’t for prayer. We do believe prayer works, but we are also realistic in the diagnosis and know we have to stay vigilant in her care. I will continue to updates Ashlyn’s condition as I find time as we just registered to become members. We hope to help and receive help from others going through this journey as well. Loving and devoted parents and sister- Jerret, Kristin and Olivia.