I’m sad for what my daughter goes through

I guess I’m grieving what my daughters “normal” is. Why her?

My daughter was born on October 7, 2006 with a condition called Esophageal Atresia /Tracheo-Esophageal Fistula (EA/TEF). Basically her esophagus didn’t form correctly and she required surgery to connect it so she would be able to eat. She spent 21 days growing in NICU prior to surgery and then another month in hospital recovering and learning how to eat. When I was pregnant, they suspected this condition, but didn’t really give us any explanations as to what we would be dealing with for the rest of our lives.

After her surgery (which was the hardest thing I had ever been through at that point in my life) we kept getting visits by all of these specialists and Occupational Therapists. I kept wondering why because now that my little girl was “fixed” we should just be able to go home after she recovered from surgery.

That was not the case. When she was old enough to start on solids is when things started getting tricky. Since her esophagus didn’t form properly, it’s always going to be narrower than the average person and the motility isn’t correct since she’s missing some of the muscle rings that help move food down into the stomach. Meaning things can VERY easily get stuck and she can choke.

We have been to emergency numerous times and have had to call 9-11 a couple times as well. Every meal and snack is a challenge and stressful because we never know when something will get stuck.

Thankfully most of the time when things get stuck, they get stuck at her repair site which is past the split to the trachea, so she can usually still breathe. The only thing then that we have to worry about is getting the food either back up or down. Since she can’t swallow anything to help move it down, it can cause problems because food and fluids can pool above the obstruction and then aspiration is more likely to occur, which can lead to pneumonia or cause her to stop breathing.

We learned to deal with it and know what usually get stuck so we kind of know what foods to avoid, but it still pisses me off (excuse the language) that she will have to go through this for the rest of her life. I know she doesn’t know any other way of life, and understands that she’s special and has to chew her foods more than normal and can’t have a lot of things her friends are having.

I’m just sad for her. She’s 4 and should be enjoying life, not worrying about possibly going into the bathroom every meal for ½ hr plus to try and get something unstuck.

I’m also sad for her dad and I. We didn’t sign up for this (no one ever does) but we did everything right while I was pregnant (no smoking, no drinking, took all vitamins....etc) yet people we know who smoked during their pregnancy had “normal” kids.

I know people say that you are given what you can handle, but I didn’t want to have to handle it. I’m mad that even some close family members don’t understand, try to understand or grasp the seriousness of her condition. My brother-in-law had the audacity to ask my husband why he watches her so closely when she’s eating. Are you kidding me? He’s been witness to many of her episodes where something is stuck and he still is clueless enough to ask. (sorry, I had to vent about that one)

Like I said before, I guess I’m grieving what my daughters “normal” is. Why her?

Comments for I’m sad for what my daughter goes through

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Jul 30, 2012
poor baby
by: sofie

I know exactly how you feel i have a son whos three who has the same problem. Its so unfair it breaks my heart when sonething gets stuck and he cries and begs me for food but he cant eat because he keeps bringing it up. I love him so much and would gladly take his place if it meant he could be fine. I dont think anyone could possibly understand what parents with these children go through me and my husband have cried many tears but it doesnt change anything life is unfair innocent children shouldnt have to go threw this im so sad for my baby god bless you aiden mummy and daddy love you!!!!!

Jan 17, 2012
I grieved my daughter's loss of normalness too
by: Mary

My daughter was 5 weeks old when we found out she had a life threatning seizure condition called Aicardi's Syndrome. I grieved and grieved. Although they say never to set limitations, I had to look at reality, with moderate to severe cognitive disabilities, it was unlikely she was ever going to get married or have children.

She will be four soon in March 2012, and I can say I am in a much better place. IT still hurts sometimes, but life IS unfair, and we take the best of what we have. She is a joy, and I love her so much, but would I have chosen this life..no. I have gained so much, I would never give it up now. I hope you find the same peace as well.

Dec 13, 2010
I understand
by: Terri

A friend of mine goes through the same thing with her daughter. I see her once in awhile and have had her go sit and talk her daughter through caught food and wish I knew how to help.

I hate it when people try to make you feel better by explaining how "god" must have a reason or it gives you more strength...blah, blah, blah ...I am sure if god was involved it would not have happened to begin with. So blaming yourself for something you didn't have any control over I am positive does not help.

Please, please try to use this to teach people who want to know your situation and show others your daughters normal habits! There is no normal. Everyone has a difference. For her this is normal.

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