By Rebecca Drew
THESE parents were offered a termination after scans revealed their baby would be born with a tumour that had grown ONE-AND-A-HALF times bigger than their unborn child – but after being born three-months-early, she’s thriving.
When Lenai Schier (32) and her husband, Matt (31), who live in Darwin, Australia, found out they were expecting their second child in early 2019, they were thrilled about becoming a family of four and having a sibling for their son, Wilder (2).
Lenai suffered with severe morning sickness up until she was 18 weeks pregnant. Apart from that, nothing was amiss in the early stages of her second pregnancy, but at their 20-week scan in May 2019, Lenai and Matt were told that there was a mass growing from their baby’s tailbone.
Doctors weren’t sure what the lump was, but they speculated that it might indicate spina bifida. Two days later, Lenai and Matt were told that their baby didn’t have spina bifida but sacrococcygeal teratoma (SCT) – a rare birth defect tumour that is located at the base of the coccyx.
Lenai started to research the condition as information from the doctors was limited and she was referred to a high-risk pregnancy team to be closely monitored for the remainder of her pregnancy. Further ultrasound scans determined that Lenai’s baby had a type II tumour – mostly external but with a proportion inside the body – and it was already very large for 20 weeks.
Doctors warned Lenai and Matt that there was a large chance that their baby could be stillborn and they were offered a termination. A foetal MRI showed that the tumour wasn’t affecting their baby’s organs and they decided to proceed with the pregnancy.
Lenai had to have one ultrasound a week which was increased to two scans a week by 23-weeks. By 26 weeks, their unborn baby had developed anaemia because the heart couldn’t handle the blood flow to the tumour. The pair were sent to specialists in Adelaide to be even more closely monitored with three scans a week.
At 28 weeks, Lenai’s waters broke whilst she was in hospital and her daughter, Zalya, was born on July 8, 2019, weighing 2lb 3oz, via c-section under general anaesthetic. Zalya’s tumour weighed 3lb 4oz which she underwent a six hour surgery to remove just days later, in which she was revived several times and had five blood transfusions.
Lenai had to wait 10 days to hold Zalya in her arms as she was in NICU. After 57 days in hospital, they were discharged and after another five months, they were allowed to go home to Darwin.
Luckily, Zalya’s tumour was benign so she doesn’t seem to have any long term damage to her organs and she’s now thriving. Although she can’t walk or crawl yet, Zalya has no trouble wiggling her way around the house chasing her brother.
“The doctors told us not to google anything when they found the lump. However, my husband and I did,” said Lenai.
“The doctors said it could be several things. I don’t remember all of them but the one that stuck with me the most was spina bifida.
“For those two days, all I could think was did this happen because I didn’t take my pregnancy vitamins every single day or not eat healthy enough? I was so scared our baby wouldn’t be able to walk or she would be in a lot of pain.
“Matt and I felt overwhelmed when we got the diagnosis. Even the doctor who called us didn’t know that much information. When we were in the room asking all the doctors by Skype how bad her SCT was, they did seem worried about how large it was.
“However, they were happy that it wasn’t affecting any of her organs at this time. When we were offered a termination, we both discussed that if she wouldn’t be in pain during her life that we would continue with the pregnancy.
“When I did my own research, it was extremely difficult to get information on SCTs. I found out most of the basic things that they [the doctors] knew.
“I found out that females get it more than males, and that doctors would remove Zalya’s coccyx bone to prevent the tumour from growing back. There’s solid and cystic parts and the outcome is worse the more solid the tumour is – seventy-five per cent are benign and twelve per cent are malignant.
“I also tried to see if I could eat certain foods to shrink or stop the tumour from growing. I went on a diet to see if it would work but also keeping in mind that I needed certain things to help her health and mine. One of the things I started doing was drinking hot water with fresh lemon juice squeezed in it first thing in the morning.
“However most of the information I found on helping shrink tumours I couldn’t do because you shouldn’t eat them while pregnant or not a large amount anyway. I felt like I needed to do everything in my power to not let the tumour grow any bigger.
“I definitely felt a bit depressed about it. You want to be healthy and have your baby grow big and healthy too, but I didn’t want this other thing inside me to grow. Something that helped me the most was connecting with other women who were pregnant or who had already had their SCT babies.
“They answered so many questions and helped me learn what to expect when I did have her.
“Also, the other part that I found extremely interesting in my research was some doctors have the theory that the tumour is a twin that never formed. I feel this may make sense because my mum is a twin and my husband’s dad is a twin.
“When we got to hold her for the first time, I just remember crying – both of us were. I was just in shock at how small she was and that the SCT was larger than her. We saw the SCT on the scans and they would always tell you how much bigger it grew.
“Seeing it in person just made it so real. It was so good to see her but I was also absolutely terrified because we knew that she’d be going into surgery. We were just hoping for the best outcome in the end – that we’d be back to see our baby alive.”
Zalya had her coccyx bone removed to prevent the risk of the tumour returning and she is continually closely monitored with regular blood tests to ensure the tumour won’t come back. The risk of this is high until she reaches the age of five.
Lenai shared what it was like to bring Zalya back to Darwin for the first time and shared her words of advice to other parents.
“Coming home was such a big deal. Zalya was in the hospital for so long. Finally, all of us would be together as a family in our own home with our cat and dog. I feel like even though Zalya was already five months old when we came home, that it wasn’t until then that she started her life. At that moment, we were finally bringing our newborn baby home,” said Lenai.
“I just want her to be a happy and healthy baby. Someday, I hope that she will be able to talk with other survivors.
“I’ve actually had several women get hold of me asking about my daughter’s story saying they are pregnant and their baby has been diagnosed with an SCT.
“I know the feelings they are going through so I’m always willing to share her story.
“It’s helped me heal by sharing it and I’ve made and connected with others who were and have gone through the same thing.”