Monday was a magical day for our family. My sister Amanda gave birth to her twin sons. We had remarked all along that it was a miracle that she would have spontaneous twins. Amanda has wanted to be a Mom all her life. I was delighted that she was pregnant again and squealed when I learned it was twins. She deserved twins. She loves babies to pieces.
Her pregnancy was tough. She had a preemie once before and these twins shared a placenta. They were very high risk. She had up to three doctor's appointments a week. She had weekly ultrasounds in her final weeks.
She began dilating early and needed medication to stop labor. She was in the hospital at 29 weeks. They boys had medicines to mature their lungs and prevent brain bleeds. She got released and went right back in to deliver a day later. On Monday, July 25 just after 7:00 am, she delivered two boys, three pounds each at 30 weeks.
My family drove to the hospital and rejoiced together. They seemed just fine. They would need to stay in the NICU for a while. They were so early that no names had been chosen. The hospital room chat was about names and gossip and breast feeding - happy new baby topics. We were so happy. My sister asked that we wait to meet the babies in the NICU. She couldn't get out of bed for 12 hours after her c-section and wanted to be the second person to meet them. Her husband, Carmelo went to meet them and brought us video of the boys. Other than the tubes and wires, they looked perfect. We were happy with that. We'd have their whole lives to hold them and love them.
The first sign of trouble was that afternoon. A doctor arrived in Amanda's room with a release form. He was very blunt; Baby A was doing poorly. One of his lungs had collapsed and his lungs weren't functioning correctly. He needed a blood transfusion immediately. He has two chest tubes and a machine breathed for him. The doctor told my sister that he was very sick but should survive.
The next day was worse. By now, the babies had names. Sick baby, Enzo, was not any better. He survived the transfusion but was declining. The other baby, Ares, was healthy and thriving. He could breathe on his own. The doctors came up with a theory that fit his problems. Enzo, they feared, had no kidneys. They performed an ultrasound and couldn't find them.
Having no kidneys at birth is called Potter's syndrome. If you google it, it's unbelievably sad. Potter's syndrome babies have no amniotic fluid. This causes all sorts of problems and they die before or just after birth. Their bodies are mangled without the cushion of fluid.
Enzo didn't have that. He didn't seem to fit the pattern and didn't have the visual symptoms, so we held out hope for another doctor to find kidneys in his body and somehow explain his problems. He had less fluid than his brother but still plenty. He wasn't mangled.
This morning was Thursday. Another doctor tested the babies. Enzo has no kidneys. His diagnoses is fatal. His twin, Ares, has only one kidney. Somehow Ares pumped enough amniotic fluid for two babies with only one kidney. He supported Enzo and let him grow. Because of this, Enzo might be one of the healthiest Potter's syndrome babies ever. His doctors have offered Amanda and Carmelo the option of keeping him on dialysis. If he lived a year and a half, they would put him on the organ donor list. He would be terribly sick the whole time. In fact, his nurses winced when they heard this option. Everyone recommended against it and said he would most likely die anyway and suffer.
It was an easy but horrible decision. Tomorrow, they will gather their four year old daughter and their twins. They will unhook Enzo and hold him for the very first and only time.
I cannot imagine the pain they are going through. A month ago, we were marveling at the idea of two babies. Where would she put them? What would she do? Now, we are mourning. My baby sister is so strong but I wish I could steal this pain from her. I wish I could go back to the dozens of ultrasounds and shake the doctors, "Why don't you see this? He was no kidneys! Prepare her now!! Why does she have to find out at birth? Why does she have to meet her son and believe he will live?"
I met my nephew Enzo today. I opened the door to his little pod and I told him I would always love him. I think a sang a little song.
