My Birth Story: My premature baby was born with a 2kg tumour on her spine.

This post includes images that could be distressing for some readers.

Birth: there's nothing quite like it, and it's clear no two birth stories are the same. Which is why we're asking everyday women and some of our favourite celebrity mums to share theirs, in Mamamia's My Birth Story series. 

This week we profile Rachel Thomson, mum to baby Saylor. Saylor was born 11 weeks early with a rare tumour weighing 2.1kg, and needed to be operated on immediately after her birth in early August.

Rachel was already a mum to daughter Aubrey when she had a scan to confirm her pregnancy suspicions with Saylor at seven weeks.

"After the initial dating scan, we had the NIPT test at 11 weeks and were told we were expecting another baby girl," Rachel tells Mamamia.

"Just before the Easter weekend we had the 13 week scan, and all was well. It was another low-risk pregnancy and everything seemed fine."

When it was time for the 20 week scan, Rachel went by herself. Husband Kieran had been by her side for every other appointment, but they thought he should save his leave for when the baby arrived.

"I was happily chatting to the sonographer and noticed nothing strange, even when she asked me if I had come to the appointment alone. As it was our second baby, I made a joke that my husband was at work because this wasn't our 'first rodeo'. 

"It was only at the very end of the scan when she said she would need to get the doctor that I realised something was very wrong."

The obstetrician explained that Rachel's baby had a sacrococcygeal teratoma - a rare tumour on her spine. They managed to get husband Kieran on the phone who left work immediately to be with Rachel so they could listen and digest the difficult news together.

 "As Kieran worked over an hour away, I sat waiting and googling as much as I could because I just needed to know. When the doctor spoke to us after Kieran arrived, he said it was a 'one in 35 to 40,000 occurrence' and that it was just random. They're not sure if there's a genetic link or not, but it's more predominant in girls than boys.

"Because of the pressure that the tumour was putting on her heart and the likelihood she would be born prematurely, the doctor also said there was a 25 to 40 per cent chance she would die during the pregnancy.

"We quickly called our family and didn't really say too much on the phone and asked them to come to our house later that same day."

Because the pregnancy was so high risk, Rachel was transferred to a specialist unit at the Mater Mothers' Hospital in Brisbane for regular monitoring. 

With daughter Aubrey less than 12 months old, Rachel was still on maternity leave from her job as a guidance officer (school counsellor). Rachel and Kieran increased Aubrey's daycare days from one to two per week and enlisted the help of both sets of grandparents to ensure they were available for the multiple hospital appointments.

By 27 weeks, Rachel was having two scans per week to see how baby Saylor was progressing. 

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"Every time I saw my specialist, Professor Sailesh Kumar, I had a long list of questions. At my second scan that week on Thursday, August 4, he told me I would need to be admitted the next day. By Monday, August 8, my waters had broken, and I was in labour."

Rachel had a condition called polyhydramnios, which meant she had too much amniotic fluid. Her waters broke in part because of the tumour and this condition, meaning her cervix couldn't cope. It was as if she was full term, but baby Saylor was still so tiny.

"The tumour had grown so much that coupled with the polyhydramnios and gestational diabetes, I was incredibly uncomfortable by 25 weeks. Aside from all the worry about Saylor, this pregnancy was not a joy. 

"After my waters broke on Monday, they took me into a conference room with Kieran and Professor Kumar, a neonatologist, a midwife, and a social worker. We were told all the facts and risks about such a premature birth and we were told that if the tumour burst during birth, it might cause Saylor to pass away. It was a lot to take in, and I started crying."

Because of the risks involved and the operation that Saylor would need immediately after birth to remove the tumour, the medical team wanted to get Rachel comfortable and safe so they could hopefully perform a c-section surgery the following morning with a full team of staff and resources on hand. 

For Rachel, this meant a very long and stressful night in the birthing suite.

"I was given injections and hooked up to many lines and fluids but had been feeling contractions since our meeting earlier in the conference room. I wasn't allowed to eat or drink because I would likely go under general anaesthetic in the morning. I remember feeling very thirsty.

"At one point they couldn't find Saylor's heartbeat and after a worrying 10 minutes of being hooked up to the CTG machine, they found it. I was finally wheeled into theatre at 8.30am with Professor Kumar and around 25 other medical staff. It was such a relief to get things going."

Blood was on hand for both Rachel and Saylor and the team gave Rachel a spinal anaesthetic while they began making the vertical incision or 'classic' c-section cut.  

"They wanted as much time as possible before putting me under a general anaesthetic because it might affect Saylor. I lasted about 10 minutes as I felt the pressure of the cut going further upwards and it was overwhelming. I asked to be put under while they removed Saylor and the next thing I knew I was in recovery."

Baby Saylor and the tumour. Image: Supplied.

When tiny baby Saylor was pulled out weighing just 1.025 kilograms, she was attached to the huge tumour that was more than twice her size at 2.116 kilograms. The doctors had to resuscitate her before she was rushed to NICU to be ventilated and given her first blood transfusion. In the meantime, Rachel's blood pressure was sky high because of pre-eclampsia and as the paediatric surgeon Doctor Peter Borzi tried to explain the risks of Saylor's operation, Rachel couldn't stay awake.

Husband Kieran signed the paperwork that allowed them to begin the complex procedure to remove the tumour, but not before Rachel awoke for long enough to see and touch her tiny newborn daughter.

"Saylor was born at 9.08am on Tuesday, August 9 and at 3.30pm I was wheeled into NICU to touch her hand before she was transferred to the Queensland Children's Hospital next door for the life-saving surgery."

Dr Borzi and his team took six hours to remove the tumour that was attached both internally in Saylor's abdomen and had mushroomed out externally. She needed five blood transfusions and because there wasn't enough skin to close the wound; they created a stoma that was to remain for two months before she was strong enough for another surgery.

As Saylor recovered from her first major operation in NICU, Rachel recovered from hers.

"I'd had a regular c-section with Aubrey because she was a breech baby, so I knew the pain, but this was so much worse. I couldn't even roll over for two days, so I only had a few 'hand cuddles' with her that first week until she was strong enough for her second surgery on day nine."

The second surgery was to apply a biodegradable temporising matrix - synthetic skin often given to burn patients - to cover the open wound on her back and encourage new skin to grow over it. 

This incredible new technology was invented in Adelaide only a few years ago, and Saylor became the smallest and youngest ever recipient. It also meant she didn't need to have a skin graft.

"After this second surgery was done, I finally got to hold her for the first time. Three nurses had to help - one lifting Saylor out of the crib and two holding the various tubes and lines attached to her. By this stage, she had put on a little bit of weight, but she was still so tiny at 1.2 kilograms. 

"It was during that first proper cuddle that I allowed myself to think maybe she would be okay after all. I could let myself fall in love with her, daring to believe that she might actually make it."

Rachel and Kieran with daughters Aubrey and Saylor. Image: Supplied/Annette Dew.

Once well enough, Rachel moved out of the hospital but remained close by, moving into a hotel with Kieran before relocating to Ronald McDonald House. The grandparents kept life as normal as possible for big sister Aubrey until after about six weeks. At that stage, Kieran had to return to work while Rachel wanted to spend time with both her girls. 

"Once I could drive myself around I was then split between home and the hospital, early mornings with Aubrey, daytimes with Saylor, and then dinner and bath time with Aubrey. Aubrey didn't get to meet her baby sister until day 48 because of strict COVID restrictions and even then there was a lot of checking that she was well enough due to daycare."

Now that Saylor is finally home after her stoma was removed, she might be three months old, but she is considered one-week-old 'corrected' in terms of her newborn size and weight. 

"I still have some anxiety about her breathing because she had support for 11 weeks and I was very nervous bringing her home. She is still small and wearing premmie clothes, but she is growing and gaining strength. 

"I will forever be grateful to the incredible team who took care of her day in day out. 

"It takes a lot as a mum to walk away from your baby every day but they were all so caring and gentle and reassuring. From Professor Kumar and Doctor Borzi and all the NICU nurses and people who donated their blood; they all played a part in helping to save Saylor's life and now we are just looking forward to some time at home together as a family."

If you have a unique birth story to share, let us know by emailing a couple of short sentences to: submissions@mamamia.com.au and including 'My Birth Story' in the subject line. We will then send you a Google Form to complete.

Feature Image: Supplied.