The sermon of Ash Wednesday a year ago really spoke to me. Our priest Father Carl Buxo asked us to think about a time when we thought God was not “walking with us” and then to reflect on the realization that God was walking with us, even in the most difficult times of our lives.
I reflected back to December 14, 1999, the date of my first ultrasound. It was a day that I had been anticipating since I saw the plus sign on my home pregnancy test. It was the day Brian and I could actually get a sneak peak at 10 little fingers and toes.
Our moms were looking forward to it, too, as they had never seen an ultrasound. I didn't worry when the technician said she couldn't get the pictures that she needed and that she had to send me to a high-tech hospital.
Once there, the nurse made me walk the halls to wake up the baby and see if that would allow for a better picture. When I went back to the ultrasound room, my doctor was waiting to talk to me on the phone—not a good sign. She was very concerned about the lack of amniotic fluid and told me to call a fetal medical internal specialist right away and schedule an appointment.
At that point, I don't remember talking to the doctor—it was like I was levitating over my own body observing what was going on. I called and got an appointment with the specialist for two weeks later.
I was told that the doctor would call if he needed to see me sooner. The following morning, his office called and wanted me in on the following morning. The doctor canceled a Christmas engagement to see us. I was trying to stay positive and thought “maybe after seeing my records the doctor thinks he can help the baby.”
It wasn't to be. After doing a full exam, the doctor spent two solid hours talking to Brian and me. He took 12 pages of hand-written notes, drawings, and diagrams, which he gave us, and fully educated me on a subject I wish did not exist.
The doctor was 90 percent certain: Our baby had Potter’s Syndrome, or Bilateral Renal Agencies, a condition in which the kidneys either do not form or do not function. The kidneys (at around 12 weeks) start producing a diluted urine which the baby will release (this is the amniotic fluid) and the baby will then in turn breathe that fluid back in. This develops the lungs by the expanding and contracting of the chest. Without kidneys that function properly, amniotic fluid is not produced, and the lungs will not develop.
There is nothing medically that can be done to correct this problem. Potter’s Syndrome is a fluke that occurs in only .5 percent of all pregnancies. It is also determined at conception, which was a relief because I worried that I had done something to cause it.
The doctor’s suggestion was to “medically interrupt” (terminate) the pregnancy. The reason he squeezed us in so early was that he wanted us to have time to think through our decision before the legal window of medical interruption closed on January 3rd. I thank God for sending us to one of the most compassionate men in the medical field.
I think the doctor expected me to break down right then and there, but I remained totally calm. I was not going to let this “maybe” diagnosis shake me. I was waiting to hear “for sure” on the 27th of December—the date of the next ultrasound.
I spent the days preceding Christmas crying, begging, pleading, and making deals with God. One day I would wake up thinking “I can’t go through with this pregnancy knowing that I will not be bringing a baby home” and the next day thinking “I can’t play God. I can’t be the person that says ‘kill my baby so I can move on with my life.’” We were in a terrible mental tug of war.
On the 27th, Brian and I went to the hospital for a level II ultrasound. Father Buxo was kind enough to go with us, even though he was officially on vacation. He prayed for us in the waiting room. After an hour-and-a-half and two ultrasounds, the conclusion was still uncertain. They could tell us nothing more than they knew from the previous ultrasound.
We left and immediately went to the specialist. I told him that medically speaking we were probably insane, but morally speaking there was no way we could terminate the pregnancy not knowing 100 percent for sure that the baby would not survive. I felt like the weight of the world was lifted from my shoulders after we made our decision. It was confirmed at our third ultrasound on February 25th that the baby does indeed have Potter’s Syndrome and will not survive. If she survives birth, she will die shortly after the umbilical cord is cut.
What a roller coaster these past months have been. I’m not a person that is ever down. I had a really hard time getting past the question of “Why?”. I questioned God, asking what I did to be punished. I was angry and wanted to turn my back on God for doing such a terrible thing to Brian and me. Then all of a sudden it hit me: God wasn’t doing this to me.
I talked to my nephew’s wife, Karin, which did me a world of good. She lost a baby a year earlier in March. I never asked about it then because, truthfully, I didn’t know how. But now I wanted to know. She said that I was holding in sadness and anger, and that I was being selfish by feeling sorry for myself for not being able to keep the baby. Karin said that the baby has a purpose and a plan like the rest of us do and that he or she will fill its purpose in a short time whereas it may take years for us to fulfill ours.
She told me to think about the baby as fulfilling its destiny by helping a doctor, bringing our marriage closer, realizing the power of friendship and love of family, and strengthening my relationship with God and others.
“Think of how lucky that baby will be,” she said, “to know nothing but the love of its mother and family. It will never know pain. It will never know hate or jealousy or prejudice. All the baby will know is love and it will not have to suffer a lifetime of hardships to earn its way to the eternal kingdom.
“You are so lucky,” she said. “God is with you everyday, carrying you through this. He has chosen you to convey a message. He has chosen you to carry his messenger.”
She told me to focus on being happy because the baby feels what I feel and it’s my job to make sure that its life, no matter how short, is filled with love, joy and laughter.
I felt uplifted and strengthened. We had people all over the world praying for us, lighting candles, and putting us on their church prayer lists. I have wonderful friends and family, and sometimes I think that maybe that is why this is happening to Brian and me, because we have family and friends that will get us through this and help us go on.
I know that God is with me now. I can feel his presence more now than I have felt in my entire lifetime. I am counting on him to guide us and strengthen us through these hard times. I couldn’t continue on with this pregnancy without him. So, don’t be sad for us or for our baby. Help us celebrate her life—no matter how brief it may be.
Sarah Elizabeth Kaster
She was God’s baby, on loan for a day
by Donna Olendorf
SHE WAS A MIRACLE BABY.
Doctors predicted that infant Sarah Elizabeth Kaster, like other Potter’s Syndrome babies, would never open her eyes, never utter a sound, and never breathe on her own. Her life expectancy was two or three minutes.
Instead, she lived 22 and a half glorious hours—almost a full day. During that time, little Sarah opened her beautiful eyes, cried like any baby, and responded to her parents’ loving touch.
Holly Kaster and her husband Brian had known since December 1999 that their baby, although thriving in her mother’s womb, was not developing critical internal organs that would allow her to survive on her own. They were prepared for the worst.
What they got on April 28, 2000, was a beautiful baby girl born alive, with her daddy’s dark curly hair.
“She wasn’t supposed to go on life support because of the Potter’s Syndrome but one nurse didn’t know and hooked her up anyway,” said Kaster.
When they took her off, she turned purple, then black, then to a healthy pink. Sarah Elizabeth began breathing on her own. Each time her heartbeat slowed, her parents stroked her face and talked to her. And her heartbeat picked up its pace.
In a private ceremony, Father Buxo baptized Sarah and shortly afterwards, administered last rites. The baby died in her father’s arms.
“She went from one set of loving arms to another,” said Kaster. “And how many people can say that about their lives?”
Throughout the tragedy, the Kasters found strength in their faith.
“I thought I would be depressed after her birth,” said Holly Kaster. “But Sarah brought me so much joy in the short time she was with me, I look at her life as a total blessing. And I feel honored to have been her mother.”
(Donna Olendorf is the editor of the St. Luke’s Epistle, the award-winning church newsletter at St. Luke’s, Utica.) Reproduced with permission of the author.
