Levi was a first child for Tahlia and Leigh West and everything seemed to be going so well. Until Tahlia went into labour. Senior writer IVY JENSEN talked with the couple about the day their world turned upside down and how lucky they feel to have their little man home with them
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ECHUCA’S Levi West has a smile that will melt your heart. Because, for him, oblivion is bliss; the nine-month-old may not realise just how lucky he is.
But his parents Tahlia and Leigh West do — they have been there every painful step of the journey.
They have been on a rollercoaster ride since their little boy was born in July last year.
‘‘I had such a good pregnancy and it just went pear-shaped at the birth so it was all very unexpected and overwhelming,’’ Tahlia said.
However, three surgeries and countless trips to the Royal Children’s Hospital later and the young family has every reason to be celebrating this Easter.
‘‘We’re looking forward to a quiet Easter and year after a very long nine months,’’ Tahlia said.
‘‘He is such a happy baby so we’re enjoying time with him and just being a normal family.
‘‘That’s what we envisioned would happen after he was born.’’
Unfortunately, things didn’t go according to plan.
When Tahlia had not progressed after an 18-hour labour, an emergency caesarean saw Levi born at 6.32pm on July 17.
‘‘He came out stunned and in respiratory distress so he was flown out at 2.30am with the PIPER team to the Mercy hospital due to fluid on his lungs and risk of infection,’’ Tahlia said.
‘‘I basically got to hold him for five minutes before they flew him out. It was awful. I just cried and cried.’’
Two days later, Levi had not passed his meconium, causing his belly to become bloated, so he was rushed to the Royal Children’s Hospital.
‘‘They did some tests and found Levi was missing the connection from his bowel to his bottom,’’ Tahlia said.
‘‘He had an emergency operation to create a stoma (colostomy bag) which the surgeon called me to explain as I was in Echuca still recovering.
‘‘It was a very emotional day.’’
Paediatric surgeon Sebastian King, who specialises in colorectal conditions, told the couple Levi was born with anorectal malformation (ARM) — a rare disease that occurs in one in 5000 children — boys and girls.
Never having heard of this condition, the Wests had no choice but to put their little boy’s life in Dr King’s hands.
‘‘The fear of the unknown was the worst thing,’’ Leigh said.
Three days after Levi was born, Tahlia was discharged to the Royal Children’s as a new mum, where she and Leigh were able to stay in the new mother’s unit within the hospital to be close to Levi, before being transferred to Ronald McDonald House.
When they arrived, Levi was sedated in the Butterfly NICU.
‘‘It was amazing to be with him again but heartbreaking to see him plugged into all these tubes,’’ Tahlia said.
They spent 14 days at the RCH, which included about 10 tests for Levi and the Wests being trained on how to care for the stoma, before they were allowed to take their son home.
However, they were kept busy with appointments with Dr King and tests to discuss and plan the reconstruction of the missing part between Levi’s bowel and bottom.
On November 19, Levi had a four-hour surgery to construct that missing part — an operation Dr King has done about 100 times.
‘‘Through plastic surgery I was able to make an anus for him,’’ Dr King told the Riv.
‘‘We had to find where the muscle around his bottom was as good as it could be and then find where the bowel had stopped and dissect it down and reconstruct the muscles.’’
It was a seven-day stay in the hospital for Levi to recover.
‘‘He still had the colostomy bag at this point as the new constructed wound had to be managed before they could connect everything and several checks in between with Sebastian to check the wound was healing well,’’ Tahlia said.
Finally, on April 2, Levi had a two-hour surgery to reverse the stoma and connect his large intestine back together.
‘‘We were obviously very nervous for him,’’ Leigh said.
‘‘We were relieved it was happening but also nervous for what could go wrong,’’ Tahlia said.
‘‘It was nearly four days of fasting after surgery for all the work that had been done to heal and a seven-day stay for recovery.’’
Dr King said the operation went smoothly and Levi’s bottom had healed nicely.
‘‘He has been able to do his first proper poo in nine months which was fantastic,’’ he said.
‘‘Kids with ARM like Levi usually have associated conditions like their spine, heart or oesophagus not having formed properly but apart from his kidneys refluxing a little, he seems to be fine.
‘‘We will keep a close eye on him over the next few years to ensure he is pooing and toileting properly.’’
Tahlia said she felt so lucky to have a surgeon like Dr King, whose bedside manner had been outstanding.
‘‘He rang me as soon as the operation was over and told me everything went well. It was amazing how the team kept in touch with us the whole time,’’ she said.
Dr King said it had been a pleasure to look after Levi.
‘‘Levi was such a sweet boy and the Wests are a lovely family and so polite which makes what I do very rewarding,’’ he said.
Dr King has approached the Royal Children’s Hospital Good Friday Appeal Foundation for funding to start a colorectal clinic to have all resources needed for the children with these conditions to transition through life until they leave the children’s hospital.
The Wests are encouraging locals to support this year’s Good Friday Appeal so life-saving work at the Children’s could continue.
‘‘It’s hard to put into words how much it means to us,’’ Tahlia said.
‘‘You really don’t understand how important the RCH is until you need it and, one day, you or someone you love might need it.’’