In honor of EA/TEF Awareness Month, Ami Hays describes life with her oldest daughter, Abigail, and tells about her children's book about EA/TEF.

January is EA/TEF Awareness Month, and today Different Dream is back with a second post from the parent of a child born with the congenital anomaly. Ami Hays is today’s guest blogger, here to tell you how the birth of her daughter, Abigail, changed her life and her life’s purpose.

EA/TEF Awareness Month: Life Changes in a Moment

I was married, working a full time job, and we had a new puppy when I found out I was having my first child. Joy and scared were my first emotions. My husband and I thought about how to tell our parents and friends the great news. Several months later, things started to feel scary instead of excited. I wasn’t feeling good. I thought it was just the pregnancy until I could no longer walk from the pain in my legs, I drove to the ER and discovered I was in preterm labor from an excessive amount of amniotic fluid. I was on bed rest until the 37th week when my doctor did an ultra sound and decided to do a C-section the next day.

My daughter arrived not breathing. Scared tears were in my husbands eyes when he tried to smile. My heart raced. I wanted to see her, but only saw people around a table with no baby cries to be heard. My life changed in a moment. Why did everyone look sad? Why was my husband crying, asking me whether he should go with the baby to the Children’s Hospital or stay with me? My life changed, not the happy change I thought would arrive July 14. My baby wasn’t in my arms.

Abigail was born with an incomplete esophagus. It was in two parts. The upper portion formed a sac and the lower portion connected from the stomach to her airway. She couldn’t breath on her own, eat, or swallow even her own saliva without aspirating. This rare defect, usually undetected, is believed to occur in early fetal development. Our baby was in the hospital for 49 days. She came home, only to go back to the hospital 3 weeks later for 22 days longer. She had a total of 3 surgeries and a blood transfusion in her first 3 months of life.

EA/TEF Is an Unknown Journey

Ami holding Abigail, a few weeks old, for her first feeding by mouth.

Ami holding Abigail, a few weeks old, for her first feeding by mouth.

I made my first parental decision–whether to breast feed or bottle feed–over the phone with my husband as we consented to life-saving surgery for our daughter. In the maternity ward, I listened to crying babies being held by their mothers and fathers. My second parenting decision was to get up and go to Children’s Hospital to be with my new family.

Once my baby came home, she cried and made odd noises. Her eyes bulged as though saying, “Help!” Nothing about her crying seemed normal. I wanted her to tell me her cries were normal, so I could feel peace. Then one day she became silent in the middle of a cry. She wasn’t breathing, and her mouth was foaming. I performed a terrified parent version of CPR not taught at the hospital. Finally, I called 911. She survived, but the same thing happened several more times. She had severe trachiamalcia, which often accompanies EA/TEF. A year later, another life-saving surgery corrected the problem.

Nothing was easy or written out for us to follow. By age 2, Abigail had a binder full of “who she was” information. Learning to eat was not a natural milestone. It was an experience of gagging, choking, and ER visits. Even now, family gatherings, holiday festivities, birthday parties, summer barbeques, play times with friends, and most recently the new adventure of school, are filled with constant anxiety and and fear of losing her in a choking episode. What is so effortless to others is so exhausting to the family of EA/TEF child.

EA/TEF Is Hanging onto the End of a Rope

Abigail is now almost 9 years old. Each year is a new adventure with our beautiful child. Eating is such a chore, she has a feeding tube. Abigail’s “broken”  esophagus means we must be pro-active. We are always planning ahead to be sure she is safe and that my other two children can uneventful experience at the table with her or in public.

Children with invisible disabilities and special needs have lives of hardship most don’t understand. Their parents are impacted the most, since their children appear normal. But most days, these parents hang onto the end of their ropes. Alone. Others don’t know what they sacrifice. Daily, we overcome our anxieties for the good of our children and push down feelings of being cheated, jealous, and sad. Every day, I realize that simplicity and dedication to my family will get us through. Our sacrifices and feeling cheated have become a life lesson. I am responsible to help my children become the best they can be, whether or not they have a disability.

Every superhero story involves hardship, loss, or an unexpected life-changing moment. That’s why I’m currently writing Abigail’s Smile,  a children’s book about my superhero. The book helps parents start a conversation with their TEF/EA children. It explains who they are, and how their anatomy and eating abilities are alike and different, things not easy to explain to Abigail or her siblings. The book, which came alive thanks to Charlie Layton’s illustrations, should be published in the spring of 2015.

Ask Ami Your EA/TEF Questions

Do you have questions for Ami about EA/TEF, parenting, or how to purchase her upcoming book? Leave them in the comment box and she’ll get back to you!

EA/TEF Awareness Month 3

Abigail and Ami

 

Ami Hays lives in Pennsylvania with her husband Jeff, their 3 daughters (Abigail, Carlie, and Siobhan) and their dog Deuce. Ami left work to become full time mother and caregiver to her oldest daughter. Abigail was born with a series of internal birth defects called VACTERL Syndrome. EA/TEF is one of the defects. Ami stays busy and active with three energetic girls, as well as raising money for the March of Dimes. She believes in helping other families struggling to raise with children with special needs.

 

 

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