Malrotation without Volvulus

Today I arrived at the hospital just in time to run in to Ellie in her crib coming out of the elevator on her way to radiology for her GI test. I said "That's my baby!" and followed her to the xray room. They "starved" her for about 8 hours and so she was really eager to drink the barium solution that they gave her so they could follow the flow through her gastrointestinal tract. The result was what they had suspected, malrotation of the bowels without volulus which is another symptom associated with Heterotaxy Syndrome. It means that her bowels are not attached in the correct position which allows them to twist and turn and sometimes cut off the circulation which can be "catastophic" as the radiologist put it. Right now her intestine is just not attached in the correct places (malrotation), but it is not spinning (volvulus). At first he told me that the surgery would have to happen before Ellie would go home. But I later learned from talking to the surgical nurse practioner that her heart surgery would be first as it is more critical.

Heterotaxy Syndrome can vary and we are lucky that Ellie's form of the syndrome is more mild than others and only involves the heart, intestines, and spleen (so far, and we hope that is it!). I am kind of glad that she had her little episode of whatever she went through over the weekend so that all of this could be diagnosed before it was too late. It's too bad that we thought her problem was just her ASD (which is quite a big problem by itself), but then involved more veins and arteries to and from the heart, which led to the cardiologists thinking it was heterotaxy syndrome. They checked her other organs to see if they were in the correct position and realized that she had 3 little spleens instead of 1 (not that big of a deal). Lastly (hopefully), they found the problem with her bowels. I am really surprised that nothing was found on the fetal ultrasound, but then I keep thinking how nice it was to not know at that time. The doctors have been amazing as they have tried to figure out what went wrong with her and diagnose her problems. I asked Dr. Pinto if they were done finding problems and she said that the only other thing she thought of for now is that she might need a pacemaker in the future if she has problems with her SA and AV nodes in her heart. Great.

Ellie seemed pretty much herself today. She was really upset until she was given something to eat. She responded with cooing and smiles when we talked to her and followed the nurses like a hawk. She loves to be held, rocked, and patted. I think they would release her if they knew what went wrong with her because she has recovered really well and is pretty much back to normal.

Tomorrow is the day that we have been waiting for since Saturday night. The cardiologists and the cardiac surgeons get together for a meeting in the morning to discuss all the cardiac patients. I wish I could sit in on the discussion. Maybe we will have a better idea when her heart surgery will be done.