Lauren's Story
Lauren, at age 4 months
I found out I was pregnant in April 2000, when I was 27 years of age. I was delighted, as I really wanted a baby. It had been a difficult pregnancy. I had lost more than 10kg in the first 8 weeks. I also had had a bad flu that required 4 rounds of "pregnancy friendly" antibiotics and a leg abscess that the doctors unsuccessfully tried to drain under a local anesthetic. The abscess became seriously infected and it was spreading through my leg. The skin from my thigh down to my knee felt sensitive and hot like a burn. The abscess was removed when I was 18 weeks pregnant in a surgical theatre and I was given a sedative akin to a general anesthetic.
The rest of the pregnancy was not that eventful, other than being extremely thirsty, so thirsty that I was drinking 2 litres of water during the night. I was tested for diabetes and was found to be fine so the thirstiness was dismissed.
At 35 weeks, my baby was still in the breach position. I was booked in for an ultrasound to determine the position of the baby so the doctors could try and turn her into a more favourable position. I couldn't sleep thenight before. I was subconsciously concerned there was something wrong as I had felt the baby "thrashing around" like it was trying to turn but couldn't. The next day, at the appointment the lady doing the ultrasound was at first very happy and we were chatting freely. Then, came the words I will never forget,
"There is something wrong with the baby's bottom".
The ultrasound lady's face was all flushed, she ran out to get some other doctors. They were talking to each other like I was not even in the room. They called it a , "sacrococcygeal teratoma", although at the time I couldn't understand a word they were saying. And no wonder, the teratoma was very rare, one in 35-40,000 chance, 3:1 more common in girls, cause unknown.
We were then given the option of leaving the hospital to wait for the call or waiting in the hospital for someone to speak to us. After 2 hours and a strong spiritual flash where I decided the baby had to be called "Lauren" and not "Ella", because all the Lauren's I knew of were successful, particularly Lauren Burns, the tai kwan do gold medallist.
The initial "counseling" at the local suburban hospital was poor. The doctor advised that the name was "sacral" teratoma rather than sacrococcygeal teratoma which made the amount of information I could find a lot less, he also advised the tumour was in the baby's stomach and completely enclosed. This was outright wrong, the tumour was external to the baby, attached to her tailbone, with a small intra-pelvic part. Worst of all, the doctor also felt that it was not an urgent situation, that we should go home for a few weeks, and that I may possibly be delivered a week or to early. He advised I speak to an obstetrician I was no longer seeing to help coordinate what to do next. The obstetrician promptly got his secretary to call me back and advise that the suburban hospital in fact should be taking responsibility and guiding me. He also advised via his secretary that he wasn't prepared to see me because he hadn't seen me for some time. I thought the obstetrician's apparent indifference was cruel in light of the urgent situation in which an unborn child's life was in jeopardy.
In an attempt to allow myself to calm down, I surfed the Internet. Whilst there are a lot of negative things about the internet such as it having unreliable information, it was my best friend. Of course, I chose only reliable pediatric sites. I learnt a lot about SCT's like there was a 50:50 chance of my baby surviving and that they occur four times as often in girls than in boys for some unknown reason. I also learnt that "teratoma" is a Greek word meaning monster and that it is a word to describe tumour.
Thankfully, my instinct kicked in so I also made some calls, I returned to the original ultrasound people who had failed to diagnose the sct, insisting they see me. It was very stressful trying to co-ordinate the medical appointments by myself. The professor at the ultrasound clinic agreed to see me and wrote a report advising that the baby's bladder was extremely dilated and that the heart was enlarged that there was a risk of rupture. The urgency of the situation was now conveyed and understood by all. Through the blur and horror, we were admitted to the Royal Women's Hospital in Melbourne, Australia
The genetics doctor had explained the tumour was caused by a "genetic coding error" whereby the differentiated stem cells that create a human embryo, fail to degenerate once they have formed the embryo and keep growing in a clump attached to the baby.
A great surgeon from the world-class Royal Children's hospital agreed to brief us about our unborn baby's imminent birth and surgery. He also warned of the possibility of bleeding as the tumour was highly vascular. He would still try and do his very best.
After being admitted to the hospital that night, I underwent a plethora of medical tests to ensure the baby's heart was still beating. It was still beating but it was enlarged because it needed to pump blood through the teratoma as well as the rest of its' body.
Lauren was born via a priority elective c-section in November 2000. The sacrococcygeal teratoma was the size of her head ( 8-15-10cm in diameter). She was not breathing and needed to be resuscitated by a special baby ambulance team who were already in the operating theatre in anticipation. Luckily, there were a plethora of highly experienced medical staff in attendance. I only got to pat Lauren briefly through an emergency humidy-crib before she and my husband were rushed via baby ambulance to the Royal Children's Hospital.
I waited in recovery worrying sick but relieved I didn't have to have a hysterectomy which was something I had to consent to, just in case there were bleeding complication's a result of the teratoma being highly vascular (full of blood). I was shaking uncontrollably though I was mentally calm - an affect from either the drugs I was given or the naturally occurring adrenaline. I wanted to know how the baby was. I was worried she may have died and they weren't telling me.
I was eventually returned to the maternity ward where my mum spent the day looking after me. My mum was fantastic. I will never forget the smile she had because she had seen the baby briefly. I was so worried sick I couldn't smile but despite all the drama, my mum was still so proud of her first little grandchild. The nights without my baby were very hard. I was in a maternity ward with crying babies and visitors bringing in flowers for the other mums. My husband and I were reluctant to announce the birth because we weren't sure if Lauren was going to make it and we were far too concerned about the impending operation. It did not seem an appropriate time for ringing friends and family and celebrating. I couldn't sleep because of the other babies crying. I felt like I was being mentally tortured and my baby was gone. My spirits lifted when I was allowed to visit the baby in my wheel chair (she was in another hospital and my husband took me).
I saw all the babies lined up an I remember asking" which ones mine?". My husband and mum had already seen her. There she was, so sick, so beautiful, so innocent. Tubes everywhere, yet in a sweet pink silk dress with flowers. I cannot describe the pain and helplessness of seeing a sick baby battling for life. I was so proud of her that she was fighting and had survived so far. My husband and mother pointed my baby out to me.
My baby was in a pink flowered silk dress, tubes everywhere and a ventilator on her nose. My baby with her rosebud lips, long eyelashes, peaceful round face. Her silky smooth skin, her blue eyes. She had more wires and tubes than I had ever seen. She smelt so beautiful. I knew also that despite still having my womb in tact, that I could not replace this child.
On day 3, a Sunday morning, its was time for Lauren's surgery to remove the tumour. Highly skilled doctors who give up their time to save lives were ready to operate. My husband and I wanted Lauren to be asleep as she was wheeled away. She was but just when she was out of our view in the theatre we heard her wake and scream. Jamie and I were too stressed to wait in the operating theatre waiting room, so we waited in the accommodation room provided by the hospital. Three long hours went by, where we couldn't talk so we just lay on the bed by the phone.
Finally, the call - Lauren had survived but there had been complications. We were ecstatic and despite my abdominal pain from the c-section, I found myself running with my husband to get down to the operating rooms. The anesthetist had explained the emergency tube was placed in the wrong spot on her chest and her lungs had filled with fluid just as the tumour was removed but the surgeons were on to it pretty quickly and CPR was successfully administered. Our precious fighter had survived again!
Lauren needed a blood transfusion later that day. She was in intensive care and looked very sick. She had lost a lot of weight and was on morphine that hadn't yet been adjusted to her new body weight without the tumour so she was very drugged out. Eventually the medication was corrected and she was taken off the respirator.
Lauren hips were also severely dislocated so she was fitted with a hip harness and was also treated for jaundice. It took 3 and a half weeks to establish breast-feeding - and I am proud to say she was breast fed until she was 15 months old. She was discharged on December 21 just in time for Christmas!
Lauren is now 8 years old. We are so thankful to have her in our life. She has made a slow steady recovery and no longer has to wear a hip brace for dislocated hips. She has no limp when she walks.
Lauren is the light of our lives and living proof that a baby can recover from a sacrococcygeal teratoma. Now that I have become one of those frazzled mothers in the supermarkets with their child running amok, I remember the days I prayed and prayed........ if only I could be so lucky!
