Little battlers: Baby beats a rare tumour
At 20 weeks gestation Cohen was found to have a rare tumour growing on his head and neck. The tumour compressed his airways and meant that surviving birth and beyond was going to be a struggle.
From 20 weeks the pregnancy was closely monitored with the risk of early labour at any time due to elevated levels of amniotic fluid from Cohen not being able to swallow effectively. Through regular scans and two MRI scans the tumour was determined to be a cervical teratoma, a very rare but benign tumour made up of fluid, bone and cartilage that affects approx one in 40,000 pregnancies. It was centred on his left jaw bone and displaced all the normal structures - his wind pipe, oesophagus and jaw bone - far to the right and pressed up in to his brain.
The medical staff at Waikato and Auckland hospitals cared for us and the decision was made that Cohen would need to be delivered via a rare specialised caesarian called an EXIT (ex utero intrapartum treatment) procedure. The EXIT is an extension of a standard caesarean section. The baby is partially delivered through the c-section opening but remains attached by its umbilical cord to the placenta while a surgeon establishes an airway so the foetus can breathe. Once the EXIT is complete, the umbilical cord is cut and clamped, and the infant is fully delivered.
The EXIT was to take place in Starship hospital at 38 weeks, but Cohen had a mind of his own and I went in to labour at 11am on the day I was 37 weeks. We were transferred by ambulance from Waikato to Starship and Cohen was born at 6.30pm that evening. The EXIT procedure went off without a hitch led by the wonderful surgeons and staff at Starship. Over 30 people were in the operating theatre - a full paediatric team for Cohen plus a team for me.
Cohen was little but tough, born at 2.5kg (5 lb 8oz). The tumour was about 60 percent the size of his head, about the size of an adult fist at birth. Cohen was admitted to Starship's paediatric ICU while I recovered at National Women's hospital.
At two weeks old a tracheostomy was inserted in to Cohen's neck to make the tumour removal surgery more straight forward. At three weeks old he underwent highly complex surgery to remove the tumour, spending eight hours in theatre. The ENT surgeon commented it was the most complex tumour he had found. The biggest challenge in removing it was how to remove it in one piece without damanging the healthy tissue around it. An incision was made across his scalp from one ear to the other, and his left cheekbone was removed to cut away the tumour and was subsequently replaced.
Cohen continued to recover and the tracheostomy was removed at six weeks old. It was a scary day to finally see Cohen breathing on his own and hear his voice (a tracheostomy bypasses the voicebox so that when he cried he made no noise). Finally we were able to take our baby home at seven weeks old.
The removal of the tumour caused damage to his facial nerve which meant the left side of his face had no movement. This caused problems feeding in the early days and he had poor weight gain. Luckily we peservered and he became stronger. He was only 3kg when we took him home but he had caught up to the 50 percentile by six months old.
Cohen has gone from strength to strength. He is now 21 months old and a very normal, active toddler. He has compensated for the use of his mouth, has a great appetite and is trying to talk. He may need further surgery to provide him with some extra movement in his mouth but most of the ongoing difficulties are now cosmetic. An MRI scan a year ago confirmed no tumour regrowth and his prognosis is now the same as any other child.
We've met other teratoma babies on a Facebook page and have been able to support other families going through the same journey as us. We are eternally grateful to the teams at Waikato, Auckland and Starship hopsitals as well as the wonderful support of Auckland Ronald McDonald House where we lived until we were able to take Cohen home.
Do you know a Kiwi kid who has beat the odds? Share their story in our Little Battlers Stuff Nation assignment.
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