I remember looking at the little arms and legs moving around on the ultrasound screen in total amazement, there was our perfect little baby. I could not believe how lucky we were to have such a perfect and healthy baby.
I didn’t have the easiest pregnancy with quite
severe morning sickness, My labour started 3 days early with my waters breaking and followed by 16 hours of excitement , pain & an epidural and after 2 long hours of pushing & and with the help of a ventuse, Anja Elizabeth made her way into the world. Weighing 7 pounds 10 and measuring 51cms.
She was perfect, though she was placed into a humidi crib for a few hours just to regulate her breathing a little.
Things went so well with us that we were allowed home two days later.
IT was hard at home as Anja was very unsettled and cried a lot. At around 5 weeks of age we noticed her tail bone was starting to grow bigger.
WE took her to a GP, by now it was becoming very red and angry looking, Anja was placed on antibiotics as the GP thought it was a cyst. A week later it was no better so we took her to our family GP who changed the antibiotics, this also didn’t work and we were given another type of antibiotic so she was on two different antibiotics.
After three weeks of being on antibiotics our Family GP told us to take her to the local Children’s Hospital’s Emergency Department as she didn’t know what was going on.
The minute Anja was seen by a doctor (medical resident) at the hospital we knew something was really wrong, he raced off to get the registrar who then inturn raced off to get the surgical registrar , each one of them asking lots of questions and doing rectal exams on our poor baby.
We were told that it looked like a cyst or tumor of some type, it seemed to be all encapsulated and she would have to have an ultrasound to see if they could find out more. We were taken straight to radiography as an emergency and found that as the ultrasound was going on, that more and more doctors were filling the room and watching. The radiographer was explaining that the tumor seemed to be external and that it was encapsulated, he pointed out the cystic and solid masses inside the tumor and the blood supply. At the time, neither me or my husband had any idea of what this ment.
After the ultrasound we had the surgical registrar come and visit us and explained that it was a tumor but they did not know what type of tumor it was. He told us worst case scenario is that it could be a sacrococcygeal teratoma. He explained that this tumor could be malignant in some cases, and that she would have to have an MRI to find out more. He told us that he would ring up with an appointment next week to see the specialist surgeon.
Two days later (after the weekend) we were called up and told that he had spoken to the surgeon and she wanted to bypass the MRI and for Anja to have the Tumor out as soon as possible and that she was being placed on the emergency surgical list for 7 days later.
I was devastated, I had no real idea on what this tumor was let alone remember the name of it, the thought that my new perfect little baby girl could have cancer was so painful for me. I am very lucky to have two very supportive families and a sister who is a PICU nurse at the children’s hospital to explain things to me and rally around supporting us.
The day came to soon for Anja’s operation, I was so frightened with Anja being so little and going under and anesthetic, the chance of her needing blood transfusions, if they could get all the tumor out, and if it was malignant.
Because of Anja being so little she was placed first on the operating list, we were taken into the pre-theater room, watching all the other parents getting gowned up to take their little ones into the theater, I was so sad because of Anja’s age again we could not take her in but the nurses came in and took her into the theater themselves.
My little bubba girl had fallen asleep in my arms when they came to take her, I will never forget the moment when the nurse, dressed in all her scrubs, took my still sleeping baby in her arms, and walked though a set of swinging theater doors, not knowing what was going to happen.
We were taken to the waiting room where a hospital volunteer came in to tell us that the nurse wanted us to know that Anja had stayed asleep the whole time even when she was put under the anesthetic and that she was laying on a special warmed lambswool type mat. I bawled my eyes out. Even writing this today I get very emotional.
We were told the operation would take approx. an hour, at an hour and 45 mins the registrar himself came out to tell us that the operation had gone well, the tumor came out easily enough and that they had taken a small amount of cartilage with the tumor. they still did not know what type of tumor it was, he was even going to bring it out to show us bit it had already been sent off to pathology.
About 45 mins later we were called to recovery as Anja was just waking and she was going to go up to the wards. Seeing her again and well was so joyful for me, I could see for myself that my baby was allright.
She was taken to the baby ward and was on a drip with painkillers and a saturation monitor on her toes. The nurse showed me the wound - I was so shocked, I was not expecting it to be so bloody or mucky. After a few hours the registrar came in to see us and said they wanted Anja to stay in overnight as concerns over infection with the wound being so close to her bottom.
I slept on a comfy sofa/bed right beside her cot, continuing to breastfeed her, and the nurses showing me how to change the dressings and clean the wound myself so I could change her nappy ect. I was very lucky for Anja to be in a newly built hospital and had access to an ensuite, expressing room/bottle room, a great parents lounge ect. Which in Australia for a public hospital as a public patient was amazing.
We went home the following day, with one emergency trip back to hospital when her wound reopened, but things progressed greatly, Anja was a changed baby, being so happy and sleeping thoughout the night. I could not believe this was the same child.
At the follow up appointment the next week we were told that the tumor was a Sacrococcygeal teratoma but we were extremely lucky for her to have the best case scenario - the tumor was only an inch round, had not attached to the spinal chord, was not growing internally, the blood supply was small to the tumor, and that it was not malignant!!!
It was not until after the diagnosis that I started to research on the net what exactly a Taeratoma was and I really did realise how much of a lucky girl Anja was.
From what I have found on the Internet, it is common for SCT (Sacro teratoma) to grow the same size as the baby in utero.
I am just amazed at how tolerant Anja is now, how happy she is, and how healthy she is, the scar is not that noticeable (due to the tumor being so small) she is just like every other little girl out there :)
Anja is now 4.5 years old and has had no more problems with any regrowth ot the teratoma. Though she does have another tumor growing on her forehead - though this one is much smaller and a commonley benign tumor. At least this time around we are not stressing so much about our daughter having to go under anesetic again, we were more concerned about cancer and other nasties.
(March 2008) (
