Rebecca & Erin

Rebecca and Erin were born the morning of April 16, 1988 by cesarean section. This type of delivery was necessary since Erin had been diagnosed by ultrasound to have a condition know as omphalocele. This is a birth defect where internal organs develop outside of the abdominal wall, through a hole in the wall. Rebecca was born without complications and went to the newborn nursery, Erin needed immediate resuscitation and was taken to the Neonatal Intensive Care Unit, where she was put on the ventilator life support. Her condition was much more severe than had been previously thought from the ultrasound. In fact it was not determined until late afternoon of the 16th that she was a “she”. Her condition now included the omphalocele, an exposed bladder, and ambiguous genitalia. The doctor who did the delivery in fact thought Erin was a boy, and told us so at the time of delivery. I previously hadn’t wished for a son at all, and really was only concerned about the child’s health since we had learned of the problems Erin had from the earlier diagnosis. But I have to say I was extremely thrilled at the time of delivery to learn I had a son.

Shortly thereafter the doctors told us they could only find out the sex of the child after the operation for the omphalocele. They also said that we may have to make a decision as to which sex to raise the child. This may seem unbelievable and confusing to anyone reading this and believe me it was very astonishing. They don’t discuss these things in “How-to-Parent” books. At this time we prayed that Erin was a she, and this was one of the few times our prayers were answered. The nature of the reconstructive operations would be greatly simplified with the baby being a girl. Erin survived that initial surgery which was the first stage of closing the omphalocele and also to connect an ileostomy for body waste removal. She was to have three more major surgeries, including a tracheostomy, a kidney removal, and further surgery on her omphalocele. Besides the countless infections that she fought, she also suffered from epileptic seizures. You can believe us when we say she had a lifetime of suffering in just a few months.

Rebecca and Erin were found to be identical twins but, for many reasons shared few similarities.

One thing they did share was their incredibly beautiful eyes. Normally babies’ eyes are large but the twins had deep crystal blue eyes you feel you could fall into, like a lake of water. Those eyes of Erin’s were so loving and understanding that she just magnetized, of course Maggie and me, but also much of the medical staff. Erin had at least seven “primaries”, that is nurses who wished to attend to her care whenever they were working their shift. While Rebecca grew steadily and strongly, Erin grew slowly and continued to have labored breathing even when assisted by ventilator life support. Rebecca was and is a very healthy, cheerful baby. She has a big booming smile. All the time she was in the NICU Erin never smiled, not even once and rightfully so; what was there to be happy about? Always struggling for air, she must have been frightened her entire life. I don’t wish to try to explain or describe the details of Erin’s stay in the hospital any more than I already have. To do so would lessen the profound effect the experience has had on myself and my family. Only those parents who have had a child in a NICU can understand this. It was unbearable; that helpless and desperate feeling that no one could help our beautiful, beautiful child.

Erin lived for 5 months and 19 days, finally succumbing to pulmonary failure which was due in part to the length of time she was on the ventilator. She died peacefully. Considering how difficult it was just after she died, it seems more difficult to cope now, nearly 8 months later. We seem to be forgetting all the physical and medical problems she had, and just have daily reminders of how much we miss her. Thank God for Rebecca. She gives us a window to think of how Erin might have been and is such a very vibrant child in her own right. We also sense that Erin’s spirit looks upon Rebecca with love and care. And when Rebecca gets into a bit of mischief, well it’s Erin’s turn to have the big booming smile.