I never had any particular desire to visit Holland, but it was to Holland that I was going. And it was in Holland that I would stay.An hour and a half after Abby was born, the neonatologist came into the room. I was sitting next to the bed. The two nurses were standing in the corners of the room. The doctor sat down opposite me. I didn't like that he was sitting.
He wished us congratulations on our beautiful new baby girl. He asked what her name was to be. Abigail Elizabeth we said. Abby.
He told us that there were a few things he needed to go over with us. "I don't suppose you had a chance to look at her after she was born, did you?", he asked. We both nodded, not quite yes, and not quite no.
Here it comes.
"There are several physical characteristics that I noted", he added.
Here it was.
I felt terrible for already knowing this for over an hour. I had already been processing it as the reality it was. Meg didn't know. I was scared for her.
Trisomy 21. Down syndrome. He stole our baby as the words came out of his mouth. He took our daughter. AJ's sister. Our dream. Our family.
Moderate to mild mental retardation. IQ ranges. Early intervention. Therapy. Special Olympics. Support groups. If I thought this was too much information to handle, to process, then the next hours, days, and weeks, would test my very ability to function as a person.
We held hands. Meg looked at me. She looked terrified. I looked back at her with the slightest hint of a smile, and I nodded "I know".
I knew.
But there was another problem. Her esophagus hadn't formed properly. Coming up from her stomach, it was connected to her lungs. Travelling down her throat, it ended in a blind pouch. Tracheoesophageal fistula with esophageal atresia. Otherwise referred to as TEF, it is a birth defect occurring in roughly 1 birth in 4,000.
It is why the tube they used to suction the amniotic fluid out of her nose and lungs after birth wouldn't pass far enough down. It is what caused the bubbles at her mouth. It was what would require her to undergo surgery 5 1/2 hours later.
And it was what most likely caused the infection that would very nearly take her from us forever.
To be continued.
4 comments:
Oh my gosh, HURRY up and finish this. :) You are such a good writer, but more importantly great husband and Daddy. I hope we can meet you guys in real life some day! :) HUGS, Nicole & family
Wow, Greg - its been nearly 10 years since I sat in that chair and heard the same words coming out of a surgeon's mouth - since a Neonatal nurse cried right along with me because she knew too...she knew that some babes with EA/TEF would spend months in the hospital.
Its also been years since I've shed a tear over it - until I read your story this morning - your writing rushed back all of those emotions, and that memory of a surgeon drawing EA/TEF on the back of an envelope for me to understand...
Thanks Heavens our girls were victorious!!
Greg - This is Carrie from T21 and boy does this post evoke some of the same feelings we had a few short months ago...now it seems like a lifetime ago. Thanks for sharing.
I know the story and I am still moved by the way you are writing this Greg. I am glad you decided it was time to share this with the world.
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