By Donna Garrett-Miller
My grandson, Noah, was born on March 21, 2019. He looked a little different than our other grandchildren. He had bright red patches of skin on his back, head, hands and chest. Then, the doctor saw his cleft palate.
The bridge of Noah’s nose was flat looking, and his nostrils were so small oxygen tubes couldn’t be placed. Some of his toes were fused together, and after a couple of hours his eyes still had not opened.
We could see him trying to open his eyes, but they seemed to be stuck. It turns out that they were fused shut.
Searching for Answers
We became very concerned that there were other issues internally. The doctors called the main hospital because their smaller one did not have the facilities to handle Noah’s case.
The ambulance arrived, and Noah was transported to the main hospital downtown. Noah went into the Newborn Intensive Care Unit (NICU) where specialists did lab work and consulted with their colleagues.
They believed everything Noah had was related, and then came the ankyloblepharon-ectodermal defects-cleft lip and/or oalate (AEC) syndrome diagnosis.
He was still in the NICU after undergoing a gastronomy tube (G-tube) placement. He got tired trying to take a bottle, and he wasn’t eating enough. Thankfully, the feeding tube down his throat wasn’t in long, and he adapted to a different nipple on his bottles.
Noah is six months old now and is developing a great personality. He doesn’t like to sit down or have belly time but he loves to stand up while someone holds him under his arms. He’s made progress in every area given he was a month early in addition to AEC.
His mom works for the family and Brian is a stay-at-home dad. Noah couldn’t be in a better place especially since Brian was a combat medic in the Army so he has tons of medical experience. Brian has the natural ability to combine being a great dad and caregiver and that makes him the perfect one for the job.
Noah still goes to multiple doctors’ appointments for different things but it’s mostly check-ups. His dermatologist at University of Mississippi Medical Center is great. She loves to see Noah and is very involved with his care. Noah’s cleft palate is due to be closed in March.
We have just begun this journey with Noah, and it will be life long. He is our sixth grandchild, and the only one with this genetic issue. He is loved so much and it grows every day.
Noah’s parents have two kids each from previous relationships, and they are very attentive to their needs and make sure to make time for them as well. Noah’s parents have very exhausting jobs, but they are fantastic and loving.
We are so proud of Noah and love him dearly in the time he’s been here.Donna Garrett-Miller
I am so grateful to God for giving Noah to this family. Our village (family) loves Noah more than you could imagine. Noah couldn’t be in a better family. They have love and support from the extended family as well. My dad, Noah’s other great-grandfather is not pictured above. He just moved from Kentucky and I have not had a chance to get his picture yet with him.
Donna Garrett-Miller is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Mississippi with her family.