Day 25: Evie Can't Catch A Break

Although we did not get to talk to the GI specialist today, Francis was able to speak with the chief of surgery about Evie's tests. It tuns out that Evie has a condition called Intestinal Malrotation.

Malrotation is a birth defect (congenital) caused by the incorrect positioning of a fetus's intestines in the abdomen while the fetus is still in the uterus. Malrotation can cause sudden twisting of the intestines, which could block food from passing through, or cut off blood supply to the intestines. Kids with Malrotation often have other congenital defects (like Evie's congenital heart defect).

There are different forms of Malrotation, but with Evie's case, her small intestines are all bunched up on the left side of her body and her large intestine (i.e., her colon) is bunched up on the right side of her body (instead of wrapping around the small intestines). Here's a image that is fairly close to Evie's condition:


You can see the word "Volvulus" in the diagram above, which is a blockage, it's when the bowel twists on itself, cutting off the blood flow to the tissue and causing the tissue to die. Often, the twisting is caused by Ladd's Bands (which are basically ligaments and connective tissue) attaching to the intestines incorrectly and causing the twisting.

Evie does not have a full blockage at this time, but she does have some constricting in the same general area. In addition to the link I posted above to KidsHealth.org, here are four more articles if you'd like to read further and see more pictures.

So what does this all mean? It's a very serious condition if not treated (your intestinal tissue can die if it looses blood flow, and you soon follow), and requires surgery to correct. The surgery is called a Ladds Procedure, and she shouldn't have any long term problems once this is corrected.

They can't rearrange her guts to the "normal" way they're supposed to be, but they can relieve the constriction to prevent any future problems by snipping some of the Ladd's Bands that are causing the constriction. She'll also have an appendectomy to guard against future problems there.

At first, the surgeon wanted Evie to have surgery on Thursday(!!). We were against that, and after learning more about how well she's been feeding at home, and that she only seems to have a problem with NG tube feedings (all the formula hits the constriction, causing the spit ups), the surgeon said he was comfortable discharging Evie later in the week on condition that she have the procedure done in about a month, and after she's regained some of her strength. Of added benefit, when she is stronger, there's a good possibility the procedure can be done laparoscopically.

The rest of my visit with Evie was very nice. I got to hold her for quite a while an she took a small bottle from me. Unfortunately, that was all of the formula she would take for the whole day, and she was put back on the NG tube later in the afternoon to supplement her I.V. fluids.



"I'm ready to take a nap, Mom!"



She fell sound asleep in my arms for about 90 minutes, then woke up when Dr. Ilbawi came in to say "Hi:"



Back at home, Gavin has been very cuddly and sweet, and has been generous with hugs and kisses. The onesie he's wearing (it's got a dancing turtle) is yet another onesie Francis bought at a Grateful Dead concert years ago.



"If anyone bugs my sister, I'll use my karate moves on them!"



Tonight after his bath, he looked through Evie's photo book and kissed her good-night. Every morning when he gets up he kisses her picture, too!