Thursday, December 4

Alex's Diagnosis

I don't know where to start. So I am just going to word vomit and hope somewhere, along the way, I make sense. As a doctor recently told me, when you ask questions, you have to then hear the answers.

Alex has a congenital intestinal condition called intestinal malrotation. I refuse to call it a birth defect because Alex is not defective. This means that his GI tract does not function in the way it should. His intestines do not rotate the way they should and other elements of his GI tract are not placed in the correct spots. Untreated, it can be a life threatening condition.
Malro via
Normal via
For most people, finding out you have "malro" as it's commonly called, is when you are vomiting bile and part of your intestines have already become obstructed and, possibly, died. By the grace of God, this is not how we found out about Alex's condition.

Alex, in the beginning of his little life, just wasn't eating as well as his brother. In fact, he was barely eating at all and not making a dirty diaper. He was fussy at feedings and seemed to always draw up his legs after spitting up. Ever the nervous new mom, I mentioned it to the doctor at a checkup, after he lost over a pound in two weeks.
At his smallest, Alex was just 5 lbs.
Reflux is common in boys and in twins. The doctor thought that could be the issue, but, just to be safe, ordered an upper GI on my sweet eleven day old. When the boys and I strolled into Baptist East hospital that day I never thought my world would change.

Alex took the upper GI like a champ, but it showed malro and would need surgery before things got too far. He is not symptomatic, beyond a few warning signs, so we had some time. Though, every single time he makes a dirty diaper, spits up or vomits, my stomach falls, as each time could be a warning that the malro has cut off the blood flow to his lower gut. Every single time means part of him could be dying.
Thankfully, now he's gaining weight, however, it bothers him to eat, so he's usually a little extra fussy at times.
Alex will undergo surgery at Children's Healthcare of Atlanta tomorrow. Dr. Heiss, our version of a Christmas angel, is going to help heal him. He will be under general anesthesia and the procedure can take a few hours. But, Dr. Heiss is the best of the best, and I feel confidence and peace about it. Everything will be fine.

We are so incredibly lucky to have caught this early, but my tiny little man still has to have the surgery to correct it. And that scares the hell out of me. 

Every malro story is different, and I am very, very lucky that we are not one of the "bad" ones. As a dear family friend, whose little girl was an emergent malro baby, told me a few days ago, "Scary is scary. You have the distinct challenge of anticipating this and worrying ahead of time; we didn’t have to do that."

My prayer tonight and tomorrow and every day is of gratitude. Thankful that I had this little voice I listened to when people told me, "babies spit up; it's normal." wasn't right for my baby. I'm thankful I can talk to Anne, because she's right, there are no pain Olympics, we've still got a mountain to face, even if hers might have been bigger. I'm thankful for modern medicine, Dr. Heiss and Children's Healthcare of Atlanta, because as their tagline says, they are dedicated to "all better."

3 comments:

  1. Alex is such a little fighter, and you are a tremendous advocate for him. You're both going to come out of this changed for the better, even if it feels like, as a doctor said to me, "hell in the hallway." You're not alone, you're carried and loved and prayed for and supported, even as you read this. Sending you all our! xoxo

    ReplyDelete
  2. Dooter Pie,

    Uncle Newton and Aunt Bev are keeping you, Mark and baby Alex in our thoughts and prayers...he's in good hands and will pull through this in good shape...we love you...

    Uncle Newton & Aunt Bev

    ReplyDelete
  3. Prayed for your little guy tonight and will continue as he heals and is "all better".

    ReplyDelete

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