Although all of his medical issues worked together against him, breathing was arguably Ethan's single biggest problem. When Ethan was born, we noticed immediately that he did not start crying. Dr. Ginsberg told us later that night that in addition to the cleft lip and palate, the anatomy of Ethan's throat and airway was also abnormal. We never knew exactly what it looked like, but apparently it was more vulnerable to obstruction than normal. This vulnerability made the secretions that drained into his throat a constant threat, which is why we had to suction him periodically throughout the day every day.

When Ethan first started having apnea episodes, in the hospital just before we brought him home, it seemed that they were a result of some obstruction in his airway. Each time we noticed one of these spells happening the nurses would suction him deeply and give him oxygen, after which he would recover. After the first couple of times however, we realized that just before each episode Ethan's head had lolled far back (hyperextended). We began to be more careful about the way we held his head but when he would get upset he would arch his back and hyperextend his neck by himself, and an apnea spell would usually follow. We would still suction him immediately, in an effort to revive him, and he always recovered.

After the eighth episode we realized that we were fighting so hard to resuscitate him more for our own interests than for his, so we decided not to intervene again during his apnea spells (see the narrative update covering 12-14-99 for more detail). As you can see from the table to the right, our previous resuscitation efforts were probably unnecessary, since the episodes continued to occur and Ethan recovered independently many times after we decided to stop "helping" him with suction or oxygen.

As we suspected all along, Ethan's breathing problems were in fact the deciding issue in his fight for life. We said on many occasions, "it's amazing what you can get used to," and anyone who deals with chronic medical problems would probably agree.  The days when Ethan did not stop breathing at least once were the exception rather than the rule.  We were especially surprised when he went two days straight without any apnea spells.  One of those days however, Monday, January 3, Ethan cried literally non-stop, so we knew there was something else wrong.

As it turned out the constant crying was a result of an ear infection, which the doctor treated (see the narrative from Jan. 3-4 for details).  Unfortunately the pain medication had the side effect of further depressing Ethan's already labored breathing.  The final entry on the chart to the right tells the rest of the story. 

Another one of Ethan's problems was a malformed valve in his heart. In a normal heart, some valves have three leaflets (tricuspid) and some have only two (bicuspid). I think the valve in question was the aortic, but I am not certain. Whichever valve it was would normally be comprised of three leaflets that, when open, permit blood to flow in only one direction. In Ethan's case however this valve had only two leaflets, but it apparently was functioning properly so it was not considered a threat.

Ethan's other heart issue was his patent ductus arteriosis (PDA), which was more of a problem at first, but apparently corrected itself. The ductus arteriosis is a kind of "bypass valve" that all babies have. While the baby is in the womb this valve allows the blood to bypass the lungs, since the lungs are not operating at that time (the mother's lungs are providing the oxygen). When the baby comes out and starts breathing air for the first time, the air pressure causes the PDA to close so that the blood will flow through the lungs to get oxygenated. Ethan's ductus arteriosis (valve) remained patent (open) for some time after the birth, which caused problems with the blood flow between the heart and lungs, and problems with oxygenation of his blood. The NICU nurse practitioner told us about this problem during the first week, but afterwards Ethan's PDA did close and his blood-oxygen levels stabilized.

These are the only two heart problems that they told us about, so I assume there were no others. One of the more common features of Trisomy 13 is an atrial and/or ventricular septal defect, which means a hole in one or more walls dividing the heart chambers. Obviously this is a much more severe problem, and is one of the main reasons that many T-13 babies don't last long after birth. Fortunately Ethan did not have this feature, even though he has full Trisomy 13.

When they started giving Ethan the breast milk, the nurses and doctors noticed that Ethan had a problem with stomach reflux-- meaning that some of the material in his stomach was coming back up into his esophagus. While this would just mean "heartburn" to most of us, Ethan's cleft palate makes this a more dangerous issue, since anything that comes far enough up his esophagus could easily get down his windpipe and into his lungs. A chest x-ray confirmed that there was indeed some matter getting into his lungs. So Ethan's first surgery was a fundoplication, performed by Dr. Adolph on November 24. The fundoplication means that they wrapped the top part of Ethan's stomach around the bottom end of his esophagus, where the two connect, in order to correct the reflux problem.

Since the fundoplication was such a short procedure, Dr. Adolph also put in Ethan's gastrostomy tube (G-tube) during the same surgery. Since the vulnerability of Ethan's airway makes mouth feeding dangerous, due to the possibility of something going down the wrong pipe, this tube is a common alternative. The G-tube is basically a tube that allows Ethan to be fed directly into his stomach, bypassing his mouth and esophagus altogether (see the diagram to the right).

Ethan had one small extra digit on each hand. They were not fully formed, and were only attached by small "strings" of flesh.  We never had them removed because we didn't think it was that important. According to our doctors, this is one of the more common features of T-13 babies, though certainly not one that causes any major problems. 

As always, you can click on the photo to the left to see it in more detail.