On July 11, 2003, just three days before my husband David’s father passed away, I discovered I was pregnant. I didn’t tell David until after we had said goodbye to his dad. We have twin boys, born February 3, 1999, and David thought that was enough children. However, I had always had a yearning in my heart for a little girl and didn’t feel our family was complete without her.
The first few months of my pregnancy went by pretty smoothly. I assumed that carrying just one child would be a piece of cake after carrying twins the first time. I couldn’t have been more wrong. At my 19 week ultrasound, the technician was rather stoic and wasn't able to tell us whether the baby was a girl or a boy. The next day I received a call from my OB who told me that the radiologist had noticed an “area of concern” near the base of the baby’s spine. I immediately thought it was spina bifida, but the doctor said he didn’t think that was what it was. He didn’t specify what they had thought at that time, he just told me that I would need a Level II ultrasound in order to see that area more clearly.
I wasn’t able to get in to see the doctor until the following week, which made a terribly stressful weekend for all of us. When we finally got to the Level II ultrasound, the doctor told us that our baby, a girl, had a condition called sacrococcygeal teratoma. He believed that the teratoma was primarily external, with a smaller portion developing internally. At that point, since I was 20 weeks pregnant, he told us we still had the option of terminating the pregnancy but that we had to make up our minds quickly because there were only two weeks left to perform the abortion. I was horrified at the thought. I finally had my little girl and this doctor suggested that we end her life! I knew that if God was going to take her, He would do so in His time. I was not going to make a decision like that.
We went home and looked up everything we could about SCT on the internet. We made calls to several doctors and quickly discovered that some of the finest specialists for babies with SCT were in San Francisco, just a short drive from my sister’s house. My sister made some calls to UCSF’s fetal treatment center and got me an appointment with Dr. Harrison for the following week. David and I flew from our home in Phoenix to San Francisco just a week after that dreadful day when we first learned about SCT. It seemed we’d read and heard so much in that time, but we had no idea how much our lives would change in just a few short months.
Meeting Dr. Harrison and his team was an incredible experience. The first ultrasound I had at UCSF was extensive. First a technician did a thorough exam, then the radiologist came in, and finally Dr. Ball, the perinatologist came in to discuss the findings with us. He told us that our baby, whom we had decided to call Maia (pronounced “Maya”) Grace, had a fairly significant tumor attached to her coccyx. Unlike the first doctor, Dr. Ball told us that the teratoma was 50% internal and 50% external. That made us unlikely candidates for fetal surgery. At this point, the teratoma was primarily cystic and Maia’s heart was strong, but they felt that there was perhaps some pressure on her kidneys. Dr. Ball, though not venturing to give us a specific prognosis, did not have a terribly optimistic demeanor.
After meeting with Dr. Ball, we went to Dr. Harrison’s office and were heartened by his optimistic outlook. He said that although we were probably not good candidates for fetal surgery, should Maia develop hydrops, he thought there was still a chance that he could perform the surgery. At this point however, he just wanted to watch her progress. There would be no need to do anything unless Maia’s heart was in trouble. So, we flew back home and decided that we would be monitored by the doctors at Phoenix Perinatal Associates (PPA), but would fly back to San Francisco to deliver Maia so that Dr. Harrison could perform the resection of her teratoma.
Just two weeks later, during the second ultrasound at PPA, the radiologist, Dr. Finberg, thought he saw some early signs of hydrops around Maia’s heart. After that appointment, I called Dr. Ball and we decided that I should fly back up to UCSF so that they could examine Maia’s heart. This time the whole family flew up to San Francisco. We were able to stay at my sister’s house so the boys got to play with their uncle and cousin during my frequent visits to the UCSF Medical Center. We stayed for two weeks, visiting the doctors for ultrasounds every other day. During that time, though Maia’s heart remained strong and there was no further evidence of hydrops, the amniotic fluid level dropped lower and lowers with each exam. The fetal specialist team met once a week and discussed their cases, but no one could determine why the fluid level kept dropping. Finally, with no other options available, the doctors thought that perhaps removing some of the fluid from the teratoma would provide Maia’s internal organs some needed space and perhaps would allow the amniotic fluid to increase. During the procedure, Dr. Ball inserted a needle through my belly and into Maia’s teratoma in order to extract some of the fluid directly from the tumor. He extracted a large amount of liquid, but by the next day, the fluid had re-accumulated. Though we were all disappointed, the doctors determined that Maia’s condition was stable. We decided to fly home for Christmas and fly back when I was at 28 weeks to deliver her at UCSF.
When we got home, we visited the PPA twice a week for ultrasounds and Maia continued to amaze everyone. Somehow the amniotic fluid level started to climb and within a couple of weeks, the level was normal again. Her heart was strong and she got perfect scores on her biophysical profiles. I talked to Dr. Ball frequently and we decided together that we would put off the delivery. Since Maia was stable, he felt there was no need to deliver her at 28 weeks. We planned to “play it by ear” and see how things went from week to week. We weren’t aware that Maia had other plans.
Apparently, Maia didn’t want to be a California citizen. She wanted to be born at home, in Arizona. On January 14, 2004, my water broke. I was 30 weeks and 5 days pregnant and we hadn’t made it to San Francisco. After finding someone to come over to stay with the boys, we quickly drove the 40 minutes it took to get to Good Samaritan Hospital in downtown Phoenix, though we briefly entertained the thought of continuing on to San Francisco. The PPA doctors started me on magnesium sulfate and shots of terbutaline to stop the contractions and to hold off Maia’s birth as long as possible. They administered steroid shots into my hip every 12 hours to assist Maia’s lung development. We met the pediatric surgeons from Phoenix Children’s Hospital and they made us feel comfortable that they could perform Maia’s surgery, though we were disappointed that Dr. Harrison would not be with us. The surgeons knew Dr. Harrison and had performed surgeries on SCTs previously, but it was disconcerting that we had not made it to San Francisco and that we did not know these doctors the way we had come to know the doctors at UCSF.
At 12:38 pm on January 17th, Maia was delivered by c-section. When she arrived, she was not breathing. In fact, I didn’t even know she had been born because I couldn’t hear anything. The NICU doctors quickly whisked Maia away as my OB stitched me up. David was with Maia in the NICU while the doctors and nurses helped her breathe. I was unaware of much that was happening because the drugs I’d been given had made it difficult for me to breathe and even more difficult for me to focus on anything. Soon the pediatric surgeons came to see David and me and told us that they needed to perform her surgery right away. They needed to remove the internal portion of the teratoma in order to give her lungs room for breathing. They wheeled me in on a bed to see my little girl before her surgery. I touched her head and told her I loved her very much. I couldn’t hold her or kiss her; I could barely see her face because of all the tubes.
The surgery was performed right inside the NICU. Maia’s heart stopped three times during the surgery and nurses had to continually assist her breathing. It became evident after the surgery that the teratoma had deprived Maia’s little lungs of the space they needed to develop properly. Her doctor, Dr. Weng of Phoenix Children’s Hospital, told us that Maia’s condition was very grave. My nurses hurriedly put me into a wheelchair so that I could get to the NICU to see my baby. When I got there I saw her: the nurses steadily pumping air into her lungs, tubes attached to every part of her body. David sat next to her, his eyes red and filled with tears. I looked from father to daughter, and I knew. We couldn’t keep our daughter alive, not this way. Her lungs just weren’t big enough. She had struggled to meet us; we had struggled to meet her. We had her with us and if this was all we would get, we would have to make the most of every moment. We told the doctor to remove the tubes, to let her die peacefully in our arms, unattached to the cold machines that kept her alive. Gently, the nurses removed the tape and tubes from her tiny body while I held my sweet Maia in my arms. I sang “Amazing Grace” to her through my halting breath. Then David wheeled us into a room the nurses had prepared in order to be with our family. Together with our mothers, David’s sister and niece, and my cousin, we said goodbye to our sweet baby girl. She died peacefully in my arms just 10 hours after she was born.
We were extremely lucky to have had Maia in our lives. She brought
hope, joy, peace and a tremendous amount of love to our lives. She’ll
stay forever in our hearts.
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