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.

Baby Noah has mittens on his hand and  a tube in his  mouth.
Here’s Noah after he was first born and in still in an incubator. Note how red his skin was from AEC syndrome.

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.

A mom sits in a rocking chair feeding baby Noah a bottle with a special nipple. Sister stands by and watches.
Noah’s mom, Jessica, feeds him a bottle on his first day home from the hospital while his big sister, Rilynn, looks on lovingly.

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 and Brian take a nap.

Loving Care

The skin on Noah’s head is healing. Papa Miller holds Noah.

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 climbs on his dad who is laying on his back on the floor.
Here’s a recent photo of Brian and Noah watching football together!

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.

Family Forever

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.

Brian Miller holds baby Noah next to staffer from Congressman's office. In the back are United States and state of Mississippi flags.
Our son, Brian (right), took baby Noah to the local office of Congressman Michael Guest, who has co-sponsored the Ensuring Lasting Smiles Act. Bradley Stewart, his staffer, is pictured left.

Donna Garrett-Miller is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives in Mississippi with her family.

Share Your Story

9 comments on “Our Special Grandson”

  1. 1
    Joy Denice Funk on October 29, 2019

    Beautifully written…
    Noah is a blessing♡

  2. 2
    Susan Barbey on October 30, 2019

    Noah is adorable. How blessed he is to have such wonderful parents and family.

    1. 3
      Jodi Edgar Reinhardt on October 31, 2019

      We agree!

  3. 4
    Neil Folnsbee on October 30, 2019

    Noah is beautiful, and certainly has no shortage of love. Thank you for sharing your story.

    1. 5
      Jodi Edgar Reinhardt on October 31, 2019

      We love when families share their stories. It’s powerful!

  4. 6
    Judy Young on October 30, 2019

    Thank you for sharing your beautiful story. It makes my heart sing when I hear these stories of children who have loving and caring families, and extended loving and caring families.

    1. 7
      Jodi Edgar Reinhardt on October 31, 2019

      Hi, Judy. We agree! Having a loving support system can make all the difference.

  5. 8
    María Paula Romero on October 30, 2019

    Noah es una bendición para toda la familia!!! Son seres llenos de amor

    1. 9
      Jodi Edgar Reinhardt on October 31, 2019

      He’s a blessing indeed!

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