In our third trimester, I was measuring large for dates, yet baby was measuring small. Her kidneys weren’t processing fluid. We were sent to a specialist who suggested we travel to Vancouver for advanced testing. We had an appointment within three days.
That day felt like everything all at once. We had a 3D ultrasound, an echocardiogram, an amniocentesis. They had started to see some flags for Trisomy 18. We had never even heard that word before. We went back out to our car and cried and cried. We had 10 healthy children, and we couldn’t understand how this could happen.
We received results within a few days—it was a baby girl, and she had Trisomy 18. It had been the best and easiest of all my pregnancies, so it was incredibly shocking to hear this news. We had no clue at all what Trisomy 18 was.
We wrote a “birth plan,” which was more of a letter to our healthcare team to ask them to do their best when Staci was born, but that we were entrusting our baby to God. That whatever time we get with her, we are going to take as a gift. She got a little help at birth, but she was born breathing. Her dad got to cut the cord. She never left our room.
Our kids were all able to come up. They gave us a big room farther away from all the other birthing rooms. They gave our family our privacy. Our friend Christine came and took some photos, and to this day, they are some of our favourite photos of Staci.
We asked if we could take her home to die at home. She wouldn’t eat, so we knew she was dying. She couldn’t nurse, and none of the bottles were working. So we took her home. We tried to stuff things around her, because she was so small, in the car seat.
In the morning when we woke up, she looked distressed. I told Karen I was going to go try and find a Haberman feeder, a special bottle. A nurse had mentioned it, though they didn’t have one at the hospital. I found one at a local drugstore. It felt like a miracle to find it. It felt like an answer to prayer. And it worked for quite a while.
At around three weeks, she started to deteriorate. She became too weak to use the Haberman. We would hold her upright so she could breathe more easily.
Then came the feeding tube decision. Staci was crying and uncomfortable. Karen phoned her friend Tracy and said, “What do I do? What would you do?” She would phone the doctor and ask what the doctor would do if this was his child. So we did that. He said something helpful for us: “This is not intervention. It’s comfort.” We started to feed her with a syringe in her feeding tube, and she settled again.
She gradually started to decline more and more. She seemed drowsy and weak.
One morning around 4am, we awoke and realized she was not breathing. She looked peaceful.
We received so many gifts along the way with her. Our faith grew significantly. It was an adventure, a journey. We wouldn’t want anyone to go through this and would never choose to go through it again, and yet we can thank God for so many things in it.
Waiting on Sunrise 