Answered Prayers

Looking back at many of Mackenzie's pictures, it's hard for me to see Trisomy 18. But it wasn't hard at first. I remember long halls leading from the NICU to the elevator. Michelle would lean on me, crying like Niagra Falls every time we'd have to leave. Mackenzie was 3 pounds and 7 ounces at birth, but her esophagus ended in a blind pouch instead of connecting to her stomach, and there was a hole between her trachea and the ascending esophagus, so she couldn't eat.
She had lost down to 2 pounds and 14 ounces before her first surgery. Michelle and I are nurses, but we were still unprepared for everything that was going on. This "tracheo-espohageal atresia" had to be repaired before she could eat.
The surgery involved a thoracotomy, basically, the surgeon deflated her lung, then after the lung was out of the way, he removed the pouch at the end of her descending esophagus, disconnected the ascending esophagus from the trachea, repaired the resulting hole in the trachea, and then anastamosed the descending esophagus to the ascending esophagus. Then he placed a tube in her chest wall next to the incision and reinflated her lung. Then the chest wall incision was closed.
She had 5 wire leads on her trunk monitoring her heart, and respirations, a wire lead to her toe monitoring her oxygenation, a tube in her chest wall keeping her lung expanded, a tube in her mouth, going to her stomach, for feeding. An IV to one arm, and another IV to her scalp. Staff came around every 4 to 6 hours to take blood for testing, and she was being given caffiene to keep her heart beating at an acceptable rate.
Michelle and I would walk down the hall and she would pray, "God, just let me know that she knows she's loved, let me see her smile. Please, let me see her smile. And don't let her die before she knows what home is." They let us take her home from the hospital in the middle of her 4th week there. Because of our nursing backgrounds her doctor felt comfortable releasing her to us, but explained that her prognosis was poor. She weighed a mere 3 pound and 14 ounces. She would not reach 4 pounds until her 4th month, at 5 months she reached 5 pounds, and continued at a pound per month until her gastrostomy tube was placed.
After getting her gastrostomy tube, at around 7 months she started sprouting. She was intubated for the procedure, and develpoed pneumonia. When she came home from the hospital, she required IV antibiotcs. and Feedings that used to take from an hour and a half to two hours, through a nasogastric tube, now could go via pump.

Knowledge Is Power, But Ignorance Is Bliss

When people learn about Mackenzie, they always ask, "Did you know before she was born?"

The answer on one hand is yes, but on the other, no.


We knew that she might be different, we had no idea how she would be different.


But then, we are all different. One of my favorite bumper stickers proclaims:



Always remember you're unique, just like everyone else!




















On September 15th, 2000 at about 2:30 PM, God blessed us forever with a tiny precious visitor who changed our lives completely.







The previous weeks had been exciting, scary, and frustrating. Dr McNally and our midwife, Esther, knew that there were problems, they had said as much.



Esther had followed Michelle's pregnancy from the start. As a Certified Nurse Midwife she had seen Michelle on each of her prenatal OB visits to Dr McNally's office. She had offered encouragement, experience, advice, her private home number, and 24/7 availability. When her patients worry, she does her best to calm their fears. Esther is magnificent at what she does, so is , as it happens, Dr Dennis McNally.




It was Dr McNally who first suggested genetic counseling. In older couples, he explained there are some risks that younger couples seldom have to consider. He recommended genetic counseling, and set up an appointment at the University of South Alabama's Center for Genetic Studies. There were urine tests, blood tests, and ultra-sonography. There were personality profiles, that probed deep into sensitive, and personal ethical issues. Then, there was the recommendation.

Amniocentesis.



Amniocentesis?



Amniocentesis, or amnio, for short, is a relatively common procedure in which a needle is inserted into the mother's abdomen and amniotic fluid is aspirated from the womb into a syringe for testing. Although incidents are few, amniocentesis has certain risks both for the mother and for the unborn child.



The "high tech", 3-D ultrasound had revealed "cysts" on the crichoid plexus of the baby's brain. The geneticist explained that in about 10% of cases, or fewer, these cysts are markers for genetic, or chromosomal anomalies. The only way to be certain is to test amniotic fluid.


The question is: what does one do with the information?



Obviously if the amnio results are negative for a genetic or chromosomal defect, one celebrates.



The dilemma presents itself when the test results come back positive.



The genetic counselor's position in presenting the recommendation for an amniocentesis was that it would provide information needed for making an informed decision to terminate the pregnancy, maintaining that carrying such a pregnancy to term puts the mother at risk.


The counselor it seems is unaware that terminating a pregnancy puts the unborn child at risk, almost every time.


There is also the argument that the results of the amnio will help the couple prepare for the added stresses that having a "special needs" baby presents.


On the other hand, having the knowledge that their unborn infant has a fatal condition that usually ends in miscarriage, or at best only hours or days of life, isn't exactly the way for an excited happy couple to stay excited and happy.



" Trust the LORD with all your heart, and do not rely on your own understanding. In all your ways acknowledge him, and he will make your paths smooth."


Ignorance it is said, is bliss. Every day is a blessing that we exchange for either joy or fear. Every moment is a choice.


Given the possible risks incurred from an amniocentesis, and benefits that the information obtained from the procedure could provide. We carefully considered our options, and when the counselor asked us, we chose bliss.