Building a Culture of Love
By Mommy, Brenda Spurlock
Being 42 and the mother of six did not alter my longing for another baby. My husband agreed and soon enough we found out we were expecting.
It was not easy from the very beginning. Just 5 weeks into my pregnancy we were in the hospital undergoing tests for an ectopic (pregnancy). I was having extreme pain and no fetus was found in the uterus, or in the tubes, which led the doctor to believe that it was in the abdomen. We were on pins and needles, and I was broken hearted, for days. After repeated ultrasounds, they ultimately found the fetus in the uterus, but it was behind in growth. I expected to lose the pregnancy, but it hung on. And yet, something was different; I just didn't feel "right". I had experienced severe emesis with my prior "successful" pregnancies, and though I had extreme nausea, I was concerned that I wasn't vomiting. I had asked for testing, but my OB felt everything was fine. Finally, I made it past the first trimester and though my mind should have been much more at ease, I was constantly troubled.
At my 18th week, we had an AFP done, due to my advanced maternal age and prior pregnancy failures. The AFP came back with a 1:25 for Trisomy 18. We were heartbroken. Twelve years earlier, with our 5th child, we had received a faulty AFP and Triple Serum Screening, so we knew the test could be wrong. But the results were confirmed with a Level II ultrasound, performed by an experienced Perinatologist.
We were told our baby was a girl and asked how that would fit into the family picture. We were thrilled...we had all been praying for a little girl. And then the silence fell on the room as the sonographer began to find one anomaly after another. The perinatologist came in and completed the ultrasound and then explained that we had six "soft markers" that confirmed that the baby had Trisomy 18. He asked us if we wanted an amniocentesis, which would give us a better than 99% accurate answer as to an exact diagnosis. I refused, saying that I did not want to do anything to risk the pregnancy or harm the baby.
Our 18-week-old "fetus", our dreams, our children's baby sister, and our infant daughter...her prognosis was that she suffered from a chromosomal disorder that was 100% fatal, according to the doctor. I sobbed, my husband went into denial, and life became a roller coaster for us. The "facts" were that the ultrasound showed that Tatum had a large VSD (hole in the ventricles of her heart), flattened facial features, clenched fists, an Arnold-Chiari malformation (spinal stuff), a large posterior encephalocele (bubble on the back of her head-possibly containing brain tissue), and I had polyhydramnios (excess amniotic fluid). I got on the Internet and began researching everything I could about Trisomy 18 and about her individual anomalies, and it wasn't good news. The doctor was right, Trisomy 18 is fatal...right down to the 100% fatal part. Tatum's anomalies were more severe than many of the cases that we could find. So, for the small percentage of babies that survive for a short amount of time, they do not have the severity of defects that Tatum had.
When we went back to my OB, he counseled us as to our options. Sadly, one of the first options he offered us was an abortion. We already knew that was not an option for us. As my pregnancy progressed, that same doctor again offered us that option and said that due to the seriousness of Tatum's defects, as diagnosed through Level II ultrasound, and the AFP results, that in the state of Kansas, all that was needed for an abortion was 2 doctors to agree that the fetus was non-viable and that we had that. We asked him to quit offering us that option. He later opened up the possibility that we might choose an early induction. Citing that I may develop high blood pressure, the baby was not viable, there were risks involved, etc. We chose to continue with the pregnancy, knowing that God had a perfect plan...and yet, not understanding any of it in the beginning.
Shortly after our diagnosis, we had dinner with friends from church and they had read about perinatal hospice in the newspaper some months prior. That night my friend emailed me information about them, and I contacted Alexandra's House the very next day. Kathy Tarbe from AH contacted me and told me they were having a retreat that very weekend in Kansas City and invited us to attend. That retreat was life--altering for my husband and myself. We had never participated in any event, including the loss of both of my parents; that was so raw and full of grief. And yet, there was also joy. There were several sets of parents sharing the losses of their infants; some who even had multiple losses. We knew loss, we had suffered miscarriages, but we could not equate that loss with the loss of a (full-term) baby. We sobbed that weekend until our faces and our heads just throbbed. Each story that was shared hit us at an emotional level that we had never experienced before. Yet what we also saw was that people go on. Life doesn't stop. There were pregnant ladies in the room...still grieving deeply for the loss of their babies, yet experiencing the miracle of a new life. It was profound.
Life continued for us as well. A monthly ultrasound showed us that Tatum's anomalies were getting worse. The Perinatologist added hydrocephalus (fluid on the brain) to Tatum's diagnosis, and month by month we watched the fluid levels increase, knowing that things were becoming more and more bleak. My OB and I were at odds, and I felt so alone in my choice to continue my pregnancy and to give my baby whatever time she had. My husband heard things differently than I did, and there were times I felt we were at odds too. I couldn't shake the extreme grief that hung over me any more than I could escape the pieces of joy that came in seeing my baby grow month after month, in those very same ultrasounds that foretold of a grave outcome.
At the same time, we received a 3D Ultrasound from Jeanette Burlbaw of Prenatal Imaging. She noted that some of the anomalies that our perinatologist had diagnosed were either improving or, in her opinion, non-existent. Those included the VSD, clenched fists, and flattened facial features. Jeanette was great about giving us a part of Tatum that we thought we would never know. We saw our baby in motion and shared that as a family.
In my 34th week, I decided to have the amnio done. I had waited until I felt that Tatum had every chance to grow and mature, and I wanted answers so that the doctors could be more prepared for Tatum. Also, I had come to a point where I felt that Tatum was much stronger than her anomalies showed...she was so active in utero, and she responded to music and the sound of her daddy's voice. .I kept thinking that maybe the doctors were wrong. I didn't like what they were saying about the end for Tatum. I wanted them to agree that they would do everything for her, not just provide her with comfort as she passed. I knew I was just grasping at straws, but I had to do all I could for Tatum while she was inside of me, as I knew there was so little I could do for her once she was born.
The results of the FISH (Fluoresence in situ hybridization) portion of the amnio came back confirming that Tatum was indeed a full Trisomy 18. One of the nurses that we had become very close to called to tell us the results. She was so kind and apologized and offered to do anything she could for us. We sobbed...again, as we had so many times before. And then, a week or so later, we received the full results of the amnio. It was not Trisomy 18, but no one knew what it was. All they could say for certain was that it was connected to her 18th Chromosome, and that they would now do whatever they could to sustain her life when she was born.
This is a story that cannot be fully expressed in a few words on paper. This was a time fraught with emotional turmoil, grief, anger, frustration, exhaustion, fear of loss...and the gift of friendship, prayer, emotional support, wisdom, and hope. The impending birth of our daughter became the focal point of not only our lives, but of our entire church family. People reached out to us in ways we could never have imagined prior to all of this.
We were scheduled to have Tatum by c-section on February 11th. But God and Tatum had different plans. My water broke at 2 a.m. on the 10th. We called the doctor, the photographer from Now I Lay Me Down to Sleep, our pastor, and Patti Lewis from Alexandra's House, and we headed for the hospital. My husband, 5 of our 6 children, and number 7 nestled still safe and secure within my womb all headed for the hospital, full of anxiety about what lay ahead. We didn't have any monitoring, as we didn't want to know if we lost Tatum during the birth process. The room was full of doctors, nurses, and other hospital personnel. Jack sat at the head of my bed and held my hand, one of the nurses kneeled by my side, and we prayed...and 3 of my 6 children stood at the surgery window, along with the photographer...waiting to capture on film and in their hearts the precious moment that Tatum came into the world. And enter the world she did...with a beautiful cry, followed by many more beautiful cries. We wept and praised God.
Tatum is 7 weeks old as I write this. She spent three weeks in the NICU at Children's Mercy Hospital, and underwent surgeries to put in a shunt for her hydrocephalus, remove the encephalocele and close off the open meninges, and a plastic surgery team did a fabulous job of fixing up the back of her head where the "bubble" had been. She has some heart, kidney, and brain "issues", and she does have Chromosome 18-or partial Trisomy 18...but she is here! She did not pass in utero, she did not pass upon birth, and it is entirely possible that she will live a full life.
When Tatum was in Mercy, our pastor came to visit and pray with us. We talked about whether Tatum was a miracle healing or if the doctors and tests could just have been all wrong. We decided that we would not have the true answers to that until we met Jesus, and supposed that by then, the answers wouldn't be needed. That is my message in writing this...medical science is not perfect. The doctors and tests showed a different outcome for Tatum than the one we are now living. There are no hard feelings toward the medical personnel, How could there be? We have Tatum. The thing I pray that they came away from this with is to give their patients a choice greater than termination or early induction. I provided them with pamphlets for Alexandra's House and stories of families who used those services. I pray that the time comes when doctors and hospitals will pass out pamphlets of hope and support before they pass out counsel of termination.